If you’re disabled you must explain yourself always. You’ll never get a medal for this. You’ll say I belong, I participate, I’m equal, though the phrases are gestural, utopian. You might as well say there are mermaids inside the sun.
A poem then:
Five crows in a dream last night
Faces of the old—a woman
Older than iron came near
The skin on her face
Like ice to a pond
But she was speaking
The language of crows
I saw it—the myth
She made no sound at all
I’m up early rummaging. Being disabled is a garage sale of the mind. I’m always moving things around. Seeing if things have more value in different settings. The salt shaker on a window sill feels better than when it was in the corner of a cupboard. Does this have something to do with what they call “universal design”?
Design: from Latin designare—to mark out, point out; devise; choose, designate, appoint. Later in English it comes to mean to form an outline or scheme. It’s a hopeful word if you bleach all the history out of it.
Universal is so hopeful it puts Shirley Temple to shame.
I think we can’t achieve universal design unless we understand what we mean by defect. I am not a defective sighted person. My friend D.J. Savarese is not a defective talking person. My pal William Peace is not a defective walking person though he gets around with a wheelchair.
Until we understand that defect or defective is as unhelpful as the mermaid inside the sun we’ll get nowhere. We will go on designing things that the majority of people cannot use.
The majority of people is a wonderful phrase. Too bad it’s unconnected to reality. It assumes that humans are static. Real people age, go blind, have industrial accidents, become wounded in wars, develop illnesses bases on genetics, have auto accidents, dive head first into shallow ponds, it’s a longer list than we’ve time for.
The majority of people are not defective, they are us.
It’s better I think to say we’re a planet of universal defectives.
Let’s call ourselves unifects.
A poem then:
Letter to Borges from London
When I was a boy I made a beehive
From old letters—dark scraps from a trunk,
Lost loves; assurances from travelers.
It was intricate work.
The blind kid and the worker bee lost whole days.
I made a library for inchworms.
Now I’m a natural philosopher but with the same restless hands.
Some days I put cities together—
Santiago and Carthage;
Toronto and Damascus.
If strangers watch closely, Borges,
They’ll see my fingers working at nothing.
In Hyde Park near the Albert Memorial and alone on a bench
I reconstructed the boroughs of New York—
Brooklyn was at the center, Kyoto in place of Queens.
This was a city of bells and gardens, a town for immigrants.
The old woman passing by saw my hands at work.
She thought I was a lost blind man, a simpleton,
Said, “Poor Dearie!” and gave me a quid.
Excerpt From: Stephen Kuusisto. “Letters to Borges.” Apple Books. https://books.apple.com/us/book/letters-to-borges/id564556086
Now I hate to sound like a high school English teacher but really, which of us is the more disabled in this poem—the blind guy thinking or the old woman?
The blind guy has design. He’s imagining better cities.
The old woman, who we’ll say has a tender heart, believes in the 19th century social construction of disability. In her unexamined view, the disabled belong in special places, are helpless, and need charity.
It’s worth remembering that this 19th century view required a design to begin with.
Here’s some helpful prose from the National Disability Authority in Ireland:
“Universal Design is the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability. An environment (or any building, product, or service in that environment) should be designed to meet the needs of all people who wish to use it. This is not a special requirement, for the benefit of only a minority of the population. It is a fundamental condition of good design. If an environment is accessible, usable, convenient and a pleasure to use, everyone benefits. By considering the diverse needs and abilities of all throughout the design process, universal design creates products, services and environments that meet peoples’ needs. Simply put, universal design is good design.”
This is excellent.
The problem arises, especially in higher educational settings, when people are asked to consider the diverse needs and abilities of students.
University faculty and administrators are not skilled when it comes to thinking about diverse learning styles or needs. In historical terms the university is built on a model of exclusion, a narrow model, one which suggests quite openly that only certain bodies and minds need apply.
Jay Dolmage writes in his wonderful book “Academic Ableism: Disability and Higher Education”:
“Disability has always been constructed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of “lower education” to justify its work and to ground its exceptionalism, and the physical gates and steps trace a long history of exclusion.”
Without universal design in classrooms, curriculum, teaching methods, websites, the university creates a de facto “lower education” system. If the blind student has to struggle to get accessible books; the wheelchair user can’t sit in the front of the room; the autistic student can’t use the proper accommodations for her needs, then the educational system is exclusionary. Let’s be clear: there are some faculty and deans who like it this way, just as they like lots of step steps that mark off the university as a place of climbing and advantage.
Colleges and universities are the least disability friendly places in the United States. The average airport is more accessible and engaged with design.
In order to have universal design in higher ed we must have inclusive education in mind when we teach.
I’m a blind college teacher. There should be nothing remarkable about this. Yet my daily presence haunts the academy. At all three universities where I’ve held tenure I’ve met obstacles to my participation in everything from meetings, classroom teaching, library research, online systems, even simple sporting events. All these basic things have been largely blocked.
Bad as these stumbling blocks are, and I promise you they’re lousy, what’s worse is the extraordinary degree of ableism I’ve met over the course of my roughly thirty year teaching career. Setbacks are one thing, perhaps even to be expected (at least initially) but prejudicial behavior is worse and I’ve experienced it over and over again. I’m a well known blind person. I have managed despite these problems to achieve “senior status”—that necrotic term for full professors.
Yet I’m not a full professor at all. I’m essentially a steerage passenger on a luxury liner, one who has wandered onto the wrong deck. This analogy should be ridiculous but it isn’t.
I’m still waiting for accessible “on boarding” materials at Syracuse University though I came there eight years ago. I asked for them four times. Because I’ve never received them I know less about the place where I work than almost everyone.
Getting accessible research materials in a timely way is grueling and often impossible yet I’m expected to teach as much as anyone else—oh, and also to be a leader in my field.
A colleague criticized me not long ago for speaking out about accessibility problems, saying, “you set back our reputation.”
In the meantime disabled students tell me almost weekly how they’re patronized by faculty and how difficult it is for them to get the help they need to succeed. What do I do? I complain. All too often my reward for speaking “behind the curtain” to multiple administrators about access problems is that I’m essentially conceived of as a malcontent. The eye rolling says it all: I should go back to steerage immediately.
My “non-disabled” faculty colleagues are not generally reliable allies. Even the ones who theorize disability and confront the social and economic history of disablement are seldom on the front lines when it comes to speaking up. Can’t get into the famous basketball arena with your service dog? That’s too bad. We’re all going to the game tonight.
A famous scholar once wrote about the “spoiled identity” the disabled are forced to endure—have been forced to suffer—every day. The word for this is stigma and everyone who hails from a historically marginalized background knows what it feels like. There’s a moue of unhappiness at the sight of you. Many sighted people think the blind don’t know it when it comes but we do.
Lately blind students have been filing civil rights complaints against colleges nationwide. I have not done this because I keep thinking my persistence and whatever in me passes for eloquence will pay off.
But you see, there’s the problem. I want a broad coalition of faculty to speak up.
In order for this to happen we must educate faculty about inclusive education as a human right and underscore the central place of universal design in that expectation.
Why is the rhetoric of diversity and inclusion at universities invariably so wooden and dead one would rather succumb to the prolixity of self help manuals? Give me Leo Buscaglia over prose exhorting the building of individual competencies or better, let’s imagine collective talent and free students (and staff) of the corporatized idee fix of the happy happy individual. If we’re to be honest we should admit universities are competitive and structurally opposed to whatever is meant by inclusion. (I like Paolo Freire’s sense of it, grass roots, promoting literacy for all, but on the American campus the term seems to mean—“tag along” as if we’re all going for a nice walk and you’ve been invited, lucky you.)
Lucky you indeed. It’s estimated that almost three quarters of disabled college students fail to graduate. What was it? The food? Must have been the chow. Yes, inclusion stops at the classroom door; stops at the inaccessible website; stops when the disability services office posits there are just a few hoops you have to jump through to get accommodations and you better follow the procedures exactly or your semester will go down the drain faster than your costume jewelry. Structurally speaking disability is to inclusion as mice are to kitchens.
At most universities and colleges disability isn’t included under the rubric of diversity. As a former administrator once said in my presence: “we don’t want people to know we have learning disabled students, it will affect our rankings.”
Talk about “Typhoid Mary”—disability might be catching! But back to the rhetoric. Consider the following, a fairly typical “letter” which a prospective college student must give to a physician in order to receive accommodations on campus:
Please provide the following information under separate cover and on practice letterhead. The authorized release of information is to include but not be limited to the following:
1. Presenting diagnosis(es) utilizing diagnostic categorization or classification of the ICD or DSM IV. Diagnoses should indicate primary, secondary, etc., and significant findings, particularly in respect to presenting problems.
2. Date the examination/assessment/evaluation was performed for the presenting diagnosis, or if following the student for an extended time, date of onset and date of an evaluation of the condition that is recent enough to demonstrate the student’s current level of functioning.
3. Tests, methodology used to determine disability. PLEASE do not send copies of the student’s medical records.
4. Identify the current functional impact on the student’s physical, perceptual and cognitive performance in activities such as mobility, self-care, note taking, laboratory assignment, testing/examinations, housing conditions/arrangements. Is this condition temporary? If temporary, what is the expected length of time to recovery?
5. Describe any treatments, medications, assistive devices/services the student is currently using. Note their effectiveness and any side effects that may impact the student’s physical, perceptual or cognitive performance.
6. Recommendations for accommodations. Explain the relationship between the student’s functional limitations and the recommendations.
7. Credentials (certification, licensure and/or training) of the diagnosing professional(s).
This information is kept confidential except as required by law.
Again, the prose above is standard boilerplate. It’s what’s for breakfast. If you have a disability and want to go to college you’ll need to be medicalized and sanitized. This is what passes for accommodation language at matriculation for most university students. Get a doctor or a psychologist to affirm you are indeed disabled—moreover, ask a medical professional to articulate “for you” what you will need in order to succeed in higher education. The falsity of the claim—that a standard MD or Ph.D. knows much about disability and it’s circumstances is nearly laughable but not quite. Inclusion is in the balance. Let’s see your disability certificate kid. Let’s see what it says we “have to” do for you. Do you feel included? What’s that? Not quite? Perhaps you have a bad attitude.
A campus that’s inclusive is accommodating because it’s classrooms, it’s digital domains, it’s syllabi, it’s assignments, it’s library, all are “beyond compliance”—which in turn means no one should need a letter from a doctor or a specialized office with its reliance on “treatments” and “functional impacts” and “cognitive performance” and the like. This language by its very nature is not inclusive nor is it meant to be—it’s designed to weed out students who might be tempted to fake a disability, because lord knows, maybe extra time when taking a test will give certain underachievers an advantage. I know of no other area of diversity where one’s provenance and authenticity must be vetted and confirmed.
Back to universal design— from the National Disability Authority in Ireland
The design and composition of an environment so that it may be accessed, understood and used
To the greatest possible extent
In the most independent and natural manner possible
In the widest possible range of situations
Without the need for adaptation, modification, assistive devices or specialised solutions, by any persons of any age or size or having any particular physical, sensory, mental health or intellectual ability or disability, and
Means, in relation to electronic systems, any electronics-based process of creating products, services or systems so that they may be used by any person.
Universal Design should incorporate a two level approach:
User-Aware Design: pushing the boundaries of ‘mainstream’ products, services and environments to include as many people as possible.
Customisable Design: design to minimise the difficulties of adaptation to particular users.
Viewing Universal Design at the Micro Level
A single design feature or a simple product, designed so that it can be used by as many people as possible.
At this level, the designer is not expected to find one design solution that accommodates the needs of 100% of the population, as Universal Design is not one size fits all. Rather, designers are urged to explore design solutions that are more inclusive; those designs that push the boundaries as far out as possible without compromising the integrity or quality of the product.
If more than one option is available for a design feature, choose the more inclusive feature. For example, when installing a handle on a door, it is always better to opt for a lever handle, rather than a door knob, as the lever handle can be opened using the elbow or a closed fist, benefiting people carrying shopping bags as well as people with limited strength in their hands.
Viewing Universal Design at the Macro Level
At this level the designer has the opportunity to combine accessible and usable design features, with customisable or adaptable features, alongside more specialised design solutions that deal with the most extreme usability issues (see levels 1-3 above).
By stepping back from the individual features and looking at the product, service or environment as a whole, designers are in a position to investigate alternatives providing equivalent experiences to users.
Examples include a user-friendly website that meets web accessibility initiative’s (wai) web content accessibility guidelines 2.0 (wcag 2.0), has a customisable user interface, and is compatible with assistive technologies.
From micro to macro, Universal Design has implications for the design of any single feature of a product, service or environment, as well as the design of that product, service or environment as a whole.
The 7 Principles of Universal Design were developed in 1997 by a working group of architects, product designers, engineers and environmental design researchers, led by the late Ronald Mace in the North Carolina State University.The purpose of the Principles is to guide the design of environments, products and communications. According to the Center for Universal Design in NCSU, the Principles “may be applied to evaluate existing designs, guide the design process and educate both designers and consumers about the characteristics of more usable products and environments.”
Principle 1: Equitable Use
Principle 2: Flexibility in Use
Principle 3: Simple and Intuitive Use
Principle 4: Perceptible Information
Principle 5: Tolerance for Error
Principle 6: Low Physical Effort
Principle 7: Size and Space for Approach and Use
The issue of inclusion for people with disabilities in higher ed is a matter of culture: far too many colleges and universities fail to imagine that people with disabilities represent a cultural movement. (Let’s leave aside for the moment the powerful statistical urgencies represented by the finding that nearly 10 per cent of matriculating freshmen are self-identifying as having a disability.)
A cultural understanding of disability means at its very core that students or staff with disabilities are our children, our sisters, daughters, sons, fathers and mothers, our veterans, our colleagues. But it means more than that: an academic or curricular awareness of disability means that our nation’s institutions of higher learning will finally sense that what they “do” they do for all and with no oppositional and expensive and demeaning hand wringing. Such a position requires that disability services and academic culture–matters of curricular planning and cultural diversity be wedded as they should be.
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.
(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