In a world ruled by 'normal,' no one is free to be who they are
By Louise Kinross
Author Jonathan Mooney has a brilliant new book out: Normal Sucks: How to Live, Learn and Thrive Outside the Lines. It is a bold call to reject the myth of normality, which “has always been propped up by and constructed on the bodies and lives of the not normal,” writes Jonathan, who has attention and learning disabilities. After graduating from Brown University, Jonathan wrote The Short Bus: A Journey Beyond Normal in 2008, about his trip across the U.S. in a special-ed bus to meet kids and adults who’d been told they were 'broken.' In his new book, he recounts his own childhood in special education, writing: “What disabled me was the way that my differences were treated in an environment that was hostile to some bodies and brains and not to others.”
BLOOM: Why was there a need for your new book?
Jonathan Mooney: We are in a moment of elevating a conversation around inclusion and diversity, equity and access—certainly within the United States. But unfortunately, often, in many contexts, diverse brains and bodies are not included in that conversation. They’re still seen as defective, and understood within a medical construct. My aspiration for this book is that it sits squarely within our global imperative to build a more equitable and diverse society, and to include a group of people who have been historically marginalized.
BLOOM: Can you talk a bit about how the concept of ‘normal’ was developed?
Jonathan Mooney: It’s a word that didn’t enter the English-speaking language, as codified by dictionary entries, until the 1860s. That’s pretty staggering when many of us consider normal as something that has always been, and always will be.
The word itself comes from the Latin word norma, first used within the discipline of geometry to mean perpendicular, or at a right angle. It then merged more broadly within the English-speaking world with statistical thinking as a way to organize human affairs.
A whole movement of public health officials and municipal governments began to apply averages to the organization of society. That is where we got the notion of normal as what is average—even though averages are, by definition, statistical abstracts that don’t exist in the world. Normal became an organizing principle for communities, school and government, and that’s when normal became an imperative: We were told to be normal, all of us.
BLOOM: So at first normal was supposed to represent the composite of the average man, but then it evolved into an impossible ideal?
Jonathan Mooney: In the 1940s, a group of folks in the U.S. who collected biometrics tried to create a physical representation of ‘normal.’ They took statistical measurements of large populations, but the data set didn’t include atypical bodies, or any minorities. It was white folks.
They made physical representations into statues called Normman and Norma, which were presented at eugenics conferences as models of what we should all be. These were not the average person—they were mythical people, idealized bodies. They looked like the statues of David.
When they were relocated to the Cleveland Museum of Health, the YMCA and a group of folks did a competition to try to find someone who looked like Norma. Over 3,000 women sent in their measurements and one winner was chosen. But at a ceremony where she was announced, the judges of normality stood up and said: ‘This woman won, but she doesn’t represent Norma, because Norma is an impossible ideal.’
BLOOM: It struck me that whether you have a diagnosed disability or not, everyone is pretending to be normal. It’s just easier for some than others.
Jonathan Mooney: I know that well, because a part of my own personal relationship with the concept of normality was to ‘fake normal.’ I had an invisible difference that was only visible in certain academic contexts. And because I was privileged in other ways—by gender and my whiteness—I could fake it for a lot of my early adolescence, and into my 20s. But it was at a tremendous personal cost. I was hiding my true self, I was rejecting parts of myself that were essential to who I was. I see it as a point of activism for all of us to stop creating normal, and to share with as many people as possible our difference—whether it’s socioeconomic, class, race, gender, ability, sexuality. Let’s share it. The only normal people are people you don’t know well.
BLOOM: In your book, you talk about how being normal is associated with being right, and virtuous, and being abnormal is wrong or bad.
Jonathan Mooney: In geometry where the word was first used to mean at a right angle, that was something that was good. To not be at a right angle was wrong. Running parallel to that, and predating it, has always been a demoralization of atypical brains and bodies in biblical times. So the left hand was the hand of the devil. Original sin was marked by body stigma. That runs deep in our collective history and consciousness. Then, in the 19th century, anything that deviated from the middle of the bell curve was categorized as sick and less than. There was a construction of the divergent not just as not normal, but as abnormal.
If you look at the definition of the word abnormal in any dictionary, the first [item] is about it deviating from the norm in an undesirable or unhealthy way, often in a medical context.
BLOOM: You write about how medicine turned what are natural human differences into abnormalities that are located in the person, and need to be fixed.
Jonathan Mooney: With the rise of the not normal becoming the abnormal, we saw the emergence of a set of interventions and techniques to make the square peg fit in the round hole. A whole set of systems and processes were dedicated to making the different regular. The apex of that was the rise of the notion of rehab—the idea of restoring someone who had fallen from the mythical normal.
BLOOM: What role did the eugenics movement play?
Jonathan Mooney: Number one, there was a ban on non-eugenic marriages. Over 20 states banned ‘defectives’ from getting married. Then whole swaths of human beings labelled defective were scooped up and incarcerated at staggering rates. This included a broad continuum of people, from the person with a physical disability, to the person who couldn’t read or was low income. Public officials made a statement that the purpose of institutionalizing, or incarcerating, was to eliminate these people. And a specific part of their plan was what they called euthanasia, which was straight-up murder.
Nazi scientists from Germany came to the U.S. to study segregation and sterilization, and brought it back to the Third Reich. They institutionalized our thinking in a number of killing initiatives. The influence of the American eugenics movement on Nazi Germany was shocking.
BLOOM: You made the point that more than 750,000 people with disabilities were murdered as part of Hitler’s T4 Program, but, after the war, this was never condemned as a crime against humanity. The doctors were never prosecuted, and we don’t have memorials to the people. Why is that?
Jonathan Mooney: I think it’s because we still think of diversity in terms of race, class, gender and sexuality, and we still think of people with disabilities as being sick or broken. It is deeply ingrained in the human consciousness.
There’s a whole line of disability theory that posits that ground zero for disqualification as a human being is disqualification around one’s ability to approximate the norm. As we embark on the great human project of building a more inclusive and equitable society, we have to include everyone. Great swaths of people have been disqualified, and we need justice for them too.
BLOOM: I liked that you suggested that instead of expanding our idea of normal to include disabilities, we have to reject normal. Why will normal always be problematic?
Jonathan Mooney: If you have an inside, you have to have an outside. When we try to claim normality, it is always contingent on the denying of other people’s normality. The notion of normal was only ever really articulated, or defined, by what it is not.
BLOOM: You can’t be both. You’re one or the other.
Jonathan Mooney: Normal is the statistical abstraction of the average, which by definition doesn’t exist. Saying ‘I’m normal’ is like saying ‘I can fly.’ It isn’t possible. When you look at human beings, it’s difference that is true.
BLOOM: You talk about how even people in the disability community try to claim normalcy by devaluing certain types of disabilities.
Jonathan Mooney: Which disability is better? Which is really deficient? Who is really disabled, and who’s not disabled enough? I have to be honest about my own maturation and journey. After I wrote my first book and claimed my learning differences as normal, the 'not normal' for me was people with physical challenges.
It’s a system, and a game, that keeps us fighting against ourselves. As we move forward, what we all need to be championing is the civil right to be different: A right to not be told you have to change, and to have an environment change to accommodate universal experiences.
BLOOM: You note how everyone is caught up in pretending they fit the ideal of normal. You wrote: 'Resisting normal starts with a refusal to hide, to cover, to deny the parts of yourself that don’t fit normal’s story for you.'
Jonathan Mooney: We see that play out in our social media culture, where we’re performing some idealized, 21st century version of Normman and Norma. We’re editing our photos, we’re curating our lives to not represent the messiness of human embodiment and experience. We’re trying to project to the world a Norma and Normman-like reality—an unrealistic, idealized, impossible dream.
BLOOM: Which is depressing to keep up.
Jonathan Mooney: We know from empirical research that people who spend a lot of time on Instagram and Facebook are more depressed and anxious. We know that children who have access to those accounts are constantly comparing themselves to this impossible norm. We know, in the United States, that suicide is the second leading cause of death in teenagers, for the first time in recorded history. It’s not all of it, but a part of it is the relentless pressure to conform to a notion of normal.
BLOOM: Why are mental and physical differences important to humanity?
Jonathan Mooney: There was a moment in history, before the rise of normalcy, when we had different constructs to understand difference. It might have been called exceptional, wondrous, odd or, as Charles Darwin said, ‘essential permutations of the species.’
Why? Variation is the fundamental driver of human evolution. We have become the dominant species… because of our ability to change. That comes not from being the same, but having every single human be different. Evolution is driven by mutations. We now call them defects, and screen them out in utero.
Difference is the essential nature of embodiment. There is no single way to be human.
BLOOM: There’s a quote in your book from 'The Rejected Body' that suggests that disabled people have unique experiences that aren’t accessible to non-disabled people.
Jonathan Mooney: It’s positing an epistemology of disability. You have access to different ways of knowing that come from different embodiments. That knowledge is valuable, in and of itself, and as a North Star to building a more humane world.
People talk about an ethics of disability, which is a philosophical term for a different way to live. It’s a rejection of a set of values of consumerism, like the notion of independence.
BLOOM: You say that it’s not our abilities, but our fragility and vulnerability that make us human. How could this lead to a healthier self-concept?
Jonathan Mooney: Anytime in human history that we’ve tried to find the norm, all we’ve ever found is difference. The irony of this story is that as we still lionize the norm in our social media, as individuals we’re alienated from the reality of ourselves.
And not just alienated, but shamed, and taught to reject essential parts of ourselves. That’s not a healthy way to live. When we deconstruct the idea of normal, and understand where it came from, we can accept and celebrate those parts of ourselves we’ve been told are shameful.
Let’s not be naïve. We’re being measured against something we can’t achieve, and told to never stop trying. We’re told there are things we can buy, or procedures we can have done, to make us more normal.
BLOOM: Why is it important for professionals working with children with disabilities to understand how cultural values about normality seep into their work?
Jonathan Mooney: Through no fault of their own, a whole continuum of professionals has been acculturated, or, one could say, indoctrinated, into the cult of normality.
One of the things that comes from understanding the history of normal—and abnormal—is a real opportunity to do it differently. There’s a shift away from what’s wrong with people who have been called disabled, to focus on what’s right with them. That’s a radical thing within everyone’s capacity to do, and it leads practitioners to think about the child's or student's right to be different, and to see themselves as advocates for systems change.
Every story I’ve heard of thriving outside the lines has been facilitated by a practitioner who focused on what was right with students—not what was wrong—and moved from a focus on the individual, to a mission to transform the system.