If you don’t know something that you want to know, what do you do? If you are conducting research on something, where do you look? Do you make a B-line for the library? Do you grab the appropriate letter from the set of encyclopedias? Or do you turn on your computer and do a Google search?
Google has become a whole new way of life. We now have all the world’s knowledge literally at our fingertips. The most powerful research tool ever to be constructed by human hands, the most impressive feat of human ingenuity and collective wisdom. And it shall be called… “google?”
What the heck is a google? Well, Google got its name from a 9-year-old nephew of a mathematician who was asked to invent a name for a number with 100 zeroes. He came up with a googol. How do I know that? That’s right, I Googled it!
Names are important. It turns out that when you blindfold people, a rose by any other name does not smell as sweet!
One of the most liberating things I ever did was to change my name. Having been raised in home in which my relationship with my father was strained at best and experiencing unhealthy marriages that did not end well, I had accumulated a long string of names. Then in the spring of 2010 I petitioned the court and dropped all of the extra baggage. Lee had been my middle name. And now, for the first time, I felt the congruence of my name actually proclaiming who I knew myself in my limited ego existence to be. Names are carry a lot of emotional weight and they are critical for communication.
My son Alex came home all excited one day from school. He was 5 or 6 six years old. He said, “Mom, I just found out that me and Alex Jones and Alex Smith all have the same middle name!” “Really?” I asked. “Yes,” he said, “Xander.”
Two weeks ago I shared with you news about Alex that is not as cute and funny. He, like nearly 1 in every 5 Americans is struggling with mental illness. A number of you have shared with me since that announcement your own struggle or a family member’s struggle or a friend’s struggle with mental illness. That’s the politically correct name – mental illness. And it’s better than many of the common pejorative names we toss around haphazardly like psycho, schizo and freak. But today I want to introduce what might be a new name in your vocabulary: Neurodiversity.
The Need for Names
I first heard the name on NPR about a month ago so I investigated it to learn more. How did I do that? Yes, I Googled it! I Googled Neurodiversity and this is what I learned. Neurodiversity is a movement to destigmatize mental illness and to recognize that brains are every bit as diverse as any other aspect of life. As we wrap up a month of talking about Diversity, I think it is more than appropriate to recognize that the mentally ill remain squarely in society’s camp of the marginalized and misunderstood.
We talked a couple of months ago about words. Our words are basically placeholders for ideas and concepts. The names are a special kind of word because they contain a whole collection of ideas and concepts.
Names lead us to making assumptions about people – some of which are clearly true and some of which are undoubtedly false. And while we know assumptions often get us in trouble, we also need them if we want to get past the first five minutes of our day without being paralyzed by analysis. Our labels help us to make quick decisions about how we should respond or behave in any particular situation or place. But we also use our labels to maintain the status quo so that we aren’t challenged to think beyond what we have already observed.
Names become a tool for dehumanizing people when we don’t want to put forth the effort of understanding them. If they are *that* then I know enough about them to know I don’t want to really know anything about them. Why would I let a silly thing like facts get in the way of altering my world view?
I had a psychology professor who used the example of “woman driver.” You’re driving along and somebody in another car does something stupid. You look. If they are a woman, you say to yourself “woman driver.” If they are a man, you say to yourself “hmph, drives just like a woman.”
Know what I’ve noticed the last couple of years? Seems like whenever someone commits an act of horrible violence, the media immediately ask if they are schizophrenic. If they aren’t, then they acted like a schizophrenic – despite the fact that violence is not even a symptom of schizophrenia. Think John Nash. Think Jack Kerouac.
Which brings me back to the name neurodiversity as opposed to mental illness. I like it this name because it suggests that people are not diseased or broken – they are different. Thomas Armstrong, the man who I heard on NPR, argues that we don’t say that a cala lilly has petal deficit disorder, we value it for its own intrinsic worth. Similarly, we need to approach mental illness and developmental disabilities from an entirely different perspective that challenges us to see the intrinsic worth of every human being and every human brain.
What is Normal?
Neurodiversity proponents say that schizophrenia, bipolar disorder, and other psychiatric conditions may have given our ancestors an evolutionary advantage because they allowed a few people to think outside of the box. When no one else could come up with an answer, it may have been these creative thinkers that pointed to another way. This theory, which emerged about a decade ago, challenges us to celebrate the differences between our brains and moves us away from our almost instinctive focus on problems and deficits.
When we look at the whole make up of humanity, we see a range of different thinking that’s made our progress in science and the creative arts possible. Picture a bell curve of humanity. To neurodiversity proponents, people who are disabled are not sick or broken, they are merely at the edges of the bell curve.
This approach strikes at the heart of the medical model that focuses on defects and deficits. Neurodiversity doesn’t ignore the struggles many people have to live functional lives, but it says we need to give at least equal attention to the assets, advantages and abilities of people who are simply wired differently.
The name “neurodiverse” tears down the false wall of separation that divides the “normal” from the not “normal” and calls into question the idea of normalcy itself. It allows us to see different ways of thinking and processing the world as natural variations instead of seeing people as bad, broken or in need of repair. To proponents of neurodiversity, the idea of a “cure” can actually feel like an attack on their being. This is particularly true in the autistic community where advocates believe autism is part of who they naturally are and who reject the idea that there is some other hidden self within. One autistic man writes that trying to cure him of autism is as detestable an effort as trying to cure someone of being gay.
A Society that Makes Accommodations
When I worked at Kandu I helped people with barriers to employment find competitive employment. Kandu and similar organizations are not in the business of fixing people or changing them into something else. They are in the business of identifying strengths and finding ways people can use those strengths to succeed in society. They are also in the business of identifying accommodations that society needs to make to help them achieve that success.
Now none of this is to romanticize the functional limitations of people on the edges of the Bell curve. I don’t propose stopping treatment or research in the field. But I am suggesting we stop looking at people as diagnoses that need to be fixed and start looking at how as a culture we can make accommodations so that everyone can survive and even find a place to thrive without having to be made into some imagined social ideal of normal.
When we name people as defective, disordered and ill, we build a wall that implicitly states that the rest of us are normal or whole, ignoring the fact that we are all flawed and imperfect. We make people into “them” and “other” in a way that might sound sympathetic and compassionate, but that also reinforces judgment and fear.
We ignore the reality that we all struggle with deficiencies and we all have aspects of our lives that we are working to improve or overcome.
The real value of the neurodiversity movement may be in reminding us that we all experience joy and sorrow, pain and hardship, challenges and opportunities and that a humanizing society is one in which we are all given the chance to make the best of what we have been dealt.
Renaming mental illness as Neurodiversity is a start. A change of name and our entire outlook and set of assumptions can change – because it forces us to change our perspective. A change of name can open us up to see and explore other truths that are out there just waiting to be discovered – and waiting to be shared. I mentioned two weeks ago that we are not traveling alone. We are on a journey together, learning how to live together in all of our wonderful diversity – including neurodiversity. We each have so much to learn and so much more we can teach.
These days we also have the resources of the entire world at our disposal. That wasn’t always the case. I heard a story just the other day that I’d like to use to close on chuckle. Two people were sitting on a couch together sharing a snack in the days before Google was invented. One said, “I just thought of something I’d like to know more about.” The other replied, “That’s a damn shame.”