If the grand success of the 20th century was the rise of disability as an accepted political identity, we intend for the 21st century to be the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights.
Including disability as a given factor in most people’s lives is essential to successfully advancing the human rights of people in minority communities; survivors of violence in the home, the school, and the street, and/or conflict zones, and as veterans; immigrant and refugees held in detention, incarcerated people, people coerced into institutionalization; people who live with chronic and catastrophic illness; neuro-diverse people; people who are young and old; male, female, and everywhere on the gender spectrum.
While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”
As you sit sweating under an increasingly sweltering sun this day, feeling the inevitable effects of a wasteful attitude toward natural resources, you may not be thinking of another type of catastrophic loss caused by another type of massive denial. I speak of almost no one’s favorite topic: Disability.
How denying disability’s central role in just about every human life relegates significant chunks of our lives — and worse still, people-sized chunks — to the rubbish heap. It may be that “disabled” doesn’t feel like a word that fits who you are. Fine. Have you ever felt vulnerable? Think of “vulnerable” as a gateway word to a chronic case of disability-speak.
The bedrock notion I grew up with about disability was that it should be tolerated and helped out. But really accepted? No.
Disability was not a part of my real life, who I really was. If I succeeded at something while being disabled, or sick, or injured, or old, etc., I would be successful “in spite” of said disability, sickness, injury, oldness, etc. I would have “overcome” my disability, and so on. Twenty-five years on since the Americans with Disabilities (ADA) was passed and 40 years after the Individuals with Disabilities Education Act (IDEA), disability is still, at best, held at arms’ length by most people when it comes to identity.
Okay. I’m going to digress here. A word about “old.” I know old is different than disabled. I have become Classic Old, not New Old which seems to require being both relaxed and excited about timed-release prescriptions for men and bath tubs in unlikely outdoor locations. I’m Classic Old, the kind where my voice is a little raspy and I’m both relaxed and excited about sitting out on the porch, complaining about the heat.
I’m Old School old. Truly. I went to old schools, the kind that weren’t legally obligated to let me in the building.
Until I was ten in 1975, I had to charm my way into three public elementary schools in Greece, Liberty, and Olean, New York. Fortunately, I had the privilege of non-threateningness. Meaning: I was a middle-class, white, tentatively upright little girl in a Milwaukee back-brace who, upon closer inspection, didn’t present like whatever my misdiagnosis of “brain damage” called to the administrative mind.
Meaning: I was lucky in an unlucky way that I did nothing to earn or deserve.
Meaning, I had the most essential building-blocks for a life I’d Forward to a Friend: the freedom and responsibility to fail repeatedly at work I cared about. I care about writing sentences. I care about fairness. In that order.
But here you are, patiently broiling under your Critical Thinking Caps. Here’s something to please think critically about. Consider two disabled people: Presidents Abraham Lincoln and Franklin Delano Roosevelt. (I would have loved to have included John F. Kennedy but, as Rand Paul has taught us, everybody over 40 has back pain.)
Both Lincoln and Roosevelt had “invisible” disabilities that their respective publics knew about and, interestingly, responded positively to. And it wasn’t simply a matter of our, “OMG, he is SO inspirational, the way he’s overcome severe depression slash polio.” No, it seems that their experience as men with disabilities was recognized as having informed them as candidates wanting to hold public office. As many contemporary people are wont to not do, neither self-described as a “person with a disability.”
Do you think either of these Presidents transformed the US in spite of his disability? I don’t.
I believe our country is vastly, immeasurably better because both Lincoln and FDR knew what it was to be vulnerable and both were courageous in applying that knowledge to the common good for the betterment of other vulnerable people.
Please take note of that part about applying that knowledge to the common good. That’s not about embracing your diagnosis or even making the leap to understanding your disability as a political identity — excellent as each of those actions can be, neither speaks to advancing the public good. Including the (currently) non-disabled public.
What I wish I had heard as a little girl with a disability was a message I’ll paraphrase from a very famous speech delivered by the President who our nation’s foremost self-certified opthlamologist has ruled a disability fraud:
And so, my fellow Americans: ask not what your country can do for your disability — ask what your disability can do for your country.
My fellow citizens of the world: ask not what America will do for your disabilities, but what together our disabilities can do for the freedom of man.
If that part of you that you consider vulnerable is the part that you need to disown, to downplay, and to deny — which, disability, hello — you may waste an important part of your life.
A lot of moments in your life will suck. Many of mine certainly have. But it’s never worked to pretend that either being called “it” by People in Charge or falling both literally and figuratively on my face weren’t my real life or happening to the real me.
What do you want to contribute to that is bigger than yourself? What is it that you have to contribute?
These questions may sound like the trite stuff of a book whose central mystery is the length of its run on the best-seller list. But they matter to me because — again, as the little girl with a disability — what I heard gently murmuring in the cultural wind was: “That’s okay, don’t worry about contributing to us (the world). You’ve got enough to deal with.” Those things I care about? The writing sentences? The fairness? (Forget being President, that’s not the point.) I cared enough to know I didn’t want to be gently excused from ambition, from life, from the world’s business.
It sounds like I had it all figured out. Nope.
I didn’t pretend I wasn’t disabled but I did pretend my disability didn’t matter all that much. That was my mistake. I shoved away some of my most potent life experience. Refusing to use the power that I own is not the way toward great work or contributions of any kind.
I want to contribute good writing as a working artist to the world of readers. I want to serve the public good and provide for my family through fundraising for disability civil and human rights work. Both of these require authenticity, sincerity, and (affiliative) humor.
Why is humor so important? Aren’t the search for self and disability and justice serious? Exactly. They are all serious. But do you know how it feels when you’re laughing really hard? The next time you are, try making a fist. Most people — thankfully — have a very difficult time committing an act of violence against themselves or others while laughing. (Laughing has often saved my writing during long years of academic papers and government grant proposals that all but demanded I commit atrocities against the English language.)
You won’t do it on your own. I owe my parents, first and foremost. You’ll have a roll-call of names to remember even if you are not in close communication: Linda Elkin, Judith Barrington, Ruth Gundle, Lynne Sharon Schwartz, Lewis Buzbee, Gish Jen, Anne Finger; Belma González, the late Barbara Brenner, Irma Herrera, Gayle Roberts.
Paraphrasing once again, “Out of other people’s great ideas I make my little sentences.” Behold how I present the opportunity before you:
If the grand success of the 20th century was the rise of disability as an accepted political identity, we intend for the 21st century to be the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights. Including disability as a given factor in most people’s lives is essential to successfully advancing the human rights of people in minority communities; survivors of violence in the home, the school, and the street, and/or conflict zones, and as veterans; immigrant and refugees held in detention, incarcerated people, people coerced into institutionalization; people who live with chronic and catastrophic illness, neuro-diverse people; people who are young and old; male, female, and everywhere on the gender spectrum. While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”
If you don’t yet know what you care about or what you want, you’re welcome to make do with my concerns.
Care about your sentences. Care about fairness.
You are going to ROCK first grade.