What Disability Knows




The poet Rilke wrote: I want to be with those who know secret things/Or else alone.

We are, in all ages, hoping for a thing we call “the inner life” which I take to mean “interior hopes and imaginings”.

The history of human kind is very short and despite that fact we have already forgotten the need to gather together and give voice to “the imaginings”–a matter that puts each one of us in danger of finding no replenishment for the soul.

Conventional religious worship doesn’t count because it rarely allows for expressions of personal feelings. We often go into a church and come away feeling as if we’ve been lectured to.

The inner life won’t be satisfied because the local minister trotted out a folk singer who played Bob Dylan’s “Blowin’ in the Wind”. It can’t be satisfied by a reading from Corinthians.

I want to be with those who know secrets…



In “The Marriage of Heaven and Hell” William Blake wrote:


If the doors of perception were cleansed everything would

appear to man as it is, infinite.


For man has closed himself up, til he sees all things thro’

narrow chinks of his cavern.



Let us suppose the person with a disability “cannot” close himself up. Let’s further suppose that the body of a disabled person can’t “afford” the “narrow chinks”  as Blake describes them.

From a disability perspective we could say that the man who has closed himself up is the able-bodied man–the one who can easily ignore his body.

Another way to say this is that the person with a disability has to return, minute by minute to his or her body–and this is not the body as “cavern” but instead, ironically, the body as the cleansed doors of perception. The broken body “is” perception itself. 

Carl Jung once wrote: “To be “normal” is the ideal aim for the unsuccessful, for all those who are still below the general level of adaptation.”

People with disabilities are adaptation itself.



Adaptation is reinvention. Reinvention is resurrection. The plots of mythologies are made from these delicate principles. Penelope, depressed and working the loom…

Adaptation is also driven by necessity. A problem. The way forward is blocked. The old metaphors won’t work. Systematic forms are no good. The last sentient citizens discover these things when their culture is finally dead.

As Norman O. Brown once said: “Real life is life after death, or resurrection.”

People with disabilities “are” the resurrection.



Problem solving; writing poems after having a stroke (William Carlos Williams); problem solving; painting alone (Frida Kahlo); problem solving; writing and traveling with MS (Nancy Mairs); problem solving; Willy Conley writing deaf plays; problem solving; Kenny Fries climbing a cliff in the Galapagos islands with his orthopedic, hand made shoes; problem solving; D.J. Savarese writing poetry of autism–purely metaphorical neuro-atypical brain dancing; problem solving; Judith Smith dancing in her wheelchair; problem solving; Georgina Kleege reinventing Helen Keller while walking alone with her white cane; problem solving; Laurie Clemens Lambeth revising her spine on the written page; everything for its existence requires its own opposite–the soul is light, the body heavy. O the heavy body teaches us the steps to real life. And then we are “in it”. Soul clap your hands.



Disability teaches what happens to the human race archetypally. Disability as metaphor (created by able bodied and pejorative symbolists) is invariably wrong.


The archetype is movement. There are no privileged dance steps, sights, thoughts, songs or gatherings…


Stephen Kuusisto

Iowa City, Iowa

July 29, 2009

0 thoughts on “What Disability Knows

  1. Thank you Laura for your kind comments. I confess that on some days I feel the oceanic oppositional forces that seek to delimit and demean people with disabilities and feel both fatigue and moments of hopelessness. Then I get a post or two like yours and I feel again that we are a community and our fight is not insignificant and our victory is not improbable. I really appreciate your words.


  2. Looking back at what I wrote yesterday I am embarrassed that I did not also write: Stephen Kuusisto shows us through his writings the need for equal education and employment, as well as the need for better treatment of the disabled in daily life.


  3. Dear Steve
    Loved your “What Disability Knows.” To the problem solving list, I would add:
    Paul Castle: My husband who can hardly walk has a tremendous attention span and can read, cook or play guitar for hours.
    Stephen Kuusisto: He is a man born with impaired eyesight who inspires everyone who has ever felt different or shunned with his graceful refusal to be treated as a lesser person, whether in a coffee shop, the entrance to an opera house, or on a public lawn with his guide dog. Anyone who treats him badly becomes the target of his gently sarcastic wit!
    Thank you for all you do, Steve, to increase awareness of disabilities and to help those of us who have always felt different and unaccepted to realize we are not alone. Laura