1.
It’s axiomatic that disability—personal or collective—is generally represented as a pure disadvantage. The word itself comes to us from the Industrial Revolution when disablement signified workers injured on the job. The term is outworn, inexact, and now itself an obstacle to people with physical differences like a bad curb cut.
The future perfect is the verb tense that expresses the idea that something will occur before another action in the future. It can also show that something will happen before a specific time in the future. Example:
By next October the Boston Red Sox will have achieved first place.
As a blind person I’ve lived my life via the future perfect. At 18 I remember saying: “By the time I’m thirty I will be a writer.” The future perfect is critical for ambition. I can and will do this.
The thread-worn term “disability” has no future perfect about it which is why disability activists have taken up the ancient word “cripple” to designate, ironically, that they’re not without capacity. A cripple can work, the disabled cannot. Parse this however you like, the issue for the disabled is how the future will stand as distinct from the past. The future perfect.
The future perfect must be concerned with diversity and center disablement as central to human experience and not as an outlier position. Strictly speaking disability is the inability to perform a major life function—standing, walking, hearing, seeing, processing information, speaking—disablement is broad. Disablement is also part and parcel of every ethnicity and community. It’s at the center of diversity.
When I worked at one of the nation’s premier guide dog schools it became apparent to me that none of the dog trainers spoke Spanish. I pushed for this but was unable to convince my superiors that multi-lingual service and outreach mattered. There are blind folks who do not know that guide dogs are available and are without cost. Blindness is also at the center of diversity.
So the future perfect where disability is concerned is about inclusion but its also about something much more generous than that term may customarily signify: it’s about us. By next October the disabled will have achieved their just place at the table.
2.
The future perfect means understanding our ways beyond the scylla and charybdis of the medical model of disability vs. the social modal. The former suggests that an incurable patient is a defeat for the physician and hence he or she becomes a problem—a living embarrassment for the medical establishment. When I spoke to a graduating class of young ophthalmologists some years ago I said the number one worst thing you can say to a patient is: “I’m sorry, there’s nothing more I can do for you.” What can an eye doctor do for a blind person? Plenty. Why? Because of the future perfect. Even as I type advanced work is happening around the globe in the fight against genetic forms of blindness. What seems incurable now will be curable tomorrow, but not for the patient who disappears and never seeks medical help again because her doctor said good riddance.
I do not argue that the blind need to be cured to be citizens. Which leads us to the social model of disability. The disabled, as evidenced by the word itself are accorded a pejorative or second class status in society. This is a 19th century idea based on the principle that the built environment (the factory world) cannot accommodate a woman without hands. (For example.)
The term reasonable accommodation means, among other things, that redesigning our work environments makes good sense. In the future perfect almost every disabled person is employable. There are a hundred reasons why this matters but let’s put an accommodating work place in a broader context: when facilities are good for the disabled they’re actually better for everyone. This is indisputable. Who, when pushing a stroller, has not been grateful for a wheelchair ramp and an alternative to a revolving door?
3.
Folks who talk about diversity often don’t think of disability as part of the matter. They think of it in purely ethnic or gendered terms. This is understandable because there’s a lot of discrimination that’s still in force and which has not been sufficiently addressed. But the disabled are part of every socially and historically marginalized group. The future perfect says that a blind person of color should have a first rate educational experience no matter where she lives and that her schoolroom should be fully inclusive from the get go.
In the future perfect disability will be understood as cross cultural competency and not as an outlier position.
In his fabulous book “Strategic Diversity Leadership” Damon Williams notes that diversity is protean, that its language changes quickly and that the best university leaders must understand that the movement of identity language has everything to do with the awakening needs of diverse communities. He writes:
“Different people use different words or names to signify membership in a particular cultural group or to define diversity on a broader level. Because these terms can be culturally specific, diversity leaders should not assume they know them. Asking members of the group their preferred term is an essential first step.”
Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916
The preferred term is about the future perfect. We will not be who we were when other people named us.
Williams adds:
“Strategic diversity leaders must be ready to work with individuals and among communities where once-stable terms and categories are undergoing considerable scrutiny. What matters is that these leaders work to address the profound and continuing challenges that lie beneath these terms, including equality, inclusion, and fairness.”
Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916
4.
In her now canonical essay “On Being a Cripple” the late poet and memoirist Nancy Mairs (who had M.S.) wrote:
“First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.”
In the future perfect the disabled are central to every community and yes, they get to swagger.
Swagger is likely one of the many words first used by Shakespeare. It appears in English for the first time in “A Midsummer Night’s Dream” and its probably a take off on the word swag witch originally mean to sway ostentatiously. As Shakespeare uses it it means to strut in an insolent or defiant manner.
Why would swaggering matter to a cripple?
Because it’s fun. In an inclusive world everyone gets to show off.
5.
Diversity within group identity is the future perfect. The black hip hop artist Leroy Moore who started a group called Krip Hop Nation puts it this way:
“Just like hip-hop is global, hip-hop artists with disabilities are global with common experiences of discrimination inside and outside of the hip-hop arena. These opportunities and my activism during the 1980s propelled my advocacy on activism, disability, police brutality in the US and across the globe.”
In the future perfect disablement is intersectional with all aspects of multiculturalism.
But there’s much more to think about.
Dancing for instance.
Everyone recalls Emma Goldman’s famous quote: “If I can’t dance I don’t want to be part of your revolution.”
Right now disability art is entering, has entered the mainstream. We’re beginning to see television and films from Hollywood make the first turn toward using disabled actors where possible. In the future perfect this will be customary.
We’re seeing more articles and essays about disability by disabled writers in publications like the New York Times.
In the future perfect disability won’t require its own section of the newspaper because it will be part of every diverse groups experience.
In the future perfect Leroy Moore has his own show on TV.
5.
A decade ago, more or less, I was sitting in a room with world class physicians and geneticists who were talking about the genes that cause congenital blindness. They were already finding ways to modify those genes as part of a future perfect plan—to restore sight in children born blind.
During the meeting one of the doctors pulled out of his pocket a brand-new device: the IPhone.
I’d no idea at that moment the iPhone and Apple Corporation would change my life profoundly.
They had the future perfect.
Today’s iPhone allows me to read anything instantly.
When I was a grad student thirty years ago the electronic scanning and reading machine in the university’s library was the size of a Maytag washing machine.
Not only will the iPhone read anything, it will take photos and then describe what’s in them.
The future perfect of disability is swagger, confidence, attainment, ease of accommodation, and respect in the public square.
The future perfect of disability will break down the biological and experiential aspects of identity formation.
The future perfect of disability will be a pure, swaggering agency.
ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.
Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org
(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger
Planet of the Blind 