Me Before You, or, It’s Life Itself Stupid

The current showing—nay, “display” (as in “public” display, as in “flogging” for the betterment of mankind) of the film “Me Before You” is more than an outpouring of murderous art, it’s a testament of sorts to neoliberalism’s incapacity to value what we used to call “the individual.” (Remember wave one Enlightenment? Remember throwing off your chains?)

The link above connects to The Guardian where a fine article by Ryan Gilbey explains the ways in which the film, based on a moist novel by JoJo Mayes spells out a message of hopelessness and euthanasia for the disabled. Many in the blogosphere have written powerful pieces about the deleterious and decadent nature of the film and the book and I recommend you read Bill Peace “Bad Cripple” here, but I’ll also quote him:

Me before you is not poignant. It is a romance novel that used disability as a plot device. It relied on one of the oldest and most destructive stereotypes associated with living with a significant disability–the assumption that death is preferable to disability. I know this because at least once or twice a year a stranger says tells me they would prefer death to using a wheelchair. Strangers have been saying this to me since I was 18 years old. As for the book addressing themes associated with life post spinal cord injury. Technically this is correct. But Will, unlike 99% of people with a spinal cord injury live on the edge of poverty. Unemployment is rampant, access to housing and mass transportation remains extremely difficult. Ableism has impacted every part of American society.   

Neoliberal, late-capitalist economies can’t imagine disability as a meaningful way of life not because paralysis or blindness or depression aren’t commonplace, but because the nature of neolib desire is made up of desire itself. In other words, neoliberalism isn’t interested in communities or the rising expectations of neighborhoods or nation states. Neoliberal desire is about abstraction—it’s pure fetishism which calls for an antiseptic world. It calls for repression wherever human beings suffer. Remember when Mitt Romney said the wire fences enclosing  Chinese factories were there to keep the envious away?

The practical aspects of disability are, if not easy to master, achievable certainly. Yet films like Me Before You invite the public to imagine that a disabled life is a burdensome thing, and too difficult to enact. Enacted life is, to put it another way, artful life. Me Before You says there’s no art to disability. In turn it says there’s no art to difficulty. The only artful life is a perfect life, an unblemished one, one that’s ultimately fictional. Lust for fictional lives ladies and gentlemen. They’re the only lives you can have.

In my new memoir (forthcoming from Simon & Schuster) I talk about disabled life as an art form. The book is about my life with a guide dog named Corky. She didn’t teach me how to be blind or how to like myself—those are tasks for human beings. But she did show me how to savor a hundred moments:

Neuroscience explains the theory of embodied mind or cognition: when we look at someone we experience an internal process that mimics another’s emotional state. Empathy works this way. And along with this comes a perception that time is slowing. This feeling of slowed time helps to create social interaction between people. Owing to Corky, I believe dogs gave us this gift. Dogs slowed us by relieving us from the fight or flee pins and needles edge of merely surviving. It’s undeniable dogs have always drawn us into the here and now.

This invitation very likely induced humans to fashion what the Greeks called “oikos”—the root of ecology, but originally a term for house-holding, and family.   

Dogs taught us to see and know our surroundings and they proved one part of providence is living right. 

Oikos, here-life. 


“If I knew then what I know now,” I often said to her. I wasn’t without irony. The phrase is sentimental and sentimentality is a wide and very sticky subject especially where dogs are concerned. “If I knew then what I know now,” I said to her as we flew in a jet liner that, according to our captain was straight above the Grand Canyon. 

Sentimentality means my dog asked me what I meant. 

“Well,” I said as she settled her head on my knee in seat 1A aboard a Boeing 737, “well I’m reminded of Carl Jung’s remark about one of his patients—Thank Heaven he could make up his mind to be neurotic. I see now after much distress, there’s nothing faulty about blindness and I should have gotten here much sooner.” 

And Corky asked me what I meant. “Should have.” 

Dogs don’t believe in should have. They don’t take stock in it, as Huck Finn would say. 

And I quoted Allen Ginsberg to my dog: O victory forget your underwear we’re free.


We talk about the art of getting naked or of flower arranging, but we never speak of the art of becoming disabled. In America disability is discussed simply as rehabilitation, as if living is no more complicated than lighting a stove. 

The art of getting disabled is a necessary subject. When we look to history we find examples of this art everywhere. Disabled makers stand against loss.  They make something of difference. When traveling in France Thomas Jefferson broke his wrist. A surgeon set the break badly. A major facet of his life was changed forever.  He was forced to put aside his treasured violin. In turn he took up long, slow, leisurely horseback rides as a meditative practice. 

Blind people don’t necessarily need dogs. White cane travel is a very fine way to get around. But I say guide dog travel is an art. It’s a means toward living much as Jefferson learned to live. Moving in consort with an animal is one way to make a life. Art is mysterious. Some find a path to a certain form. Some find an unlike form. 

Thomas Jefferson sang to his horses. He was very fond of singing. Moving in consort requires it I think.

It’s hard to imagine singing to a white cane. 

I sang all kinds of things to Corky. For her the singing meant contentment. Often I went into my bad operatic mode and sang Neapolitan love songs to her. Cardilo’s “Core N’grato” was one of my repeated offenses:

Catarí, Catarí, pecché me dici

sti parole amare;

pecché me parle e ‘o core me turmiente,



The Great Caruso I was not. I reckon the sight of a man with sunglasses singing in bad Italian to a harnessed dog may well have been amusing to many. 


Do you need to sing to live well? No. I’ve a great good friend who is nonspeaking. But in turn his whole body is music. 

My deaf friends sing. 

Many of my wheelchair pals are dancers. 

Several of my disabled friends are comedians. 

We crackle, zip, exhale, inhale, sport with our fingers, flap, jump, pop wheelies, and jingle with harnesses.

Resourceful life is practiced. Sometimes it is silly. Art can and often should be frivolous. With permission from curators at the Museum of Modern Art I was once allowed to spin Marcel DuChamp’s famous wheel, a bicycle fork with front wheel mounted upside-down on a wooden stool. DuChamp was a DaDaist. He made art by placing things side by side that did not formally belong together. A MOMA staff member handed me a pair of latex gloves and I pulled them on and with Corky watching beside me, I reached out and gave DuChamp’s aluminum wheel a spin. “This is the steering wheel of my life,” I thought. Frivolous motion.

I certainly know some blind folks who’d say I’m over the top talking about art in the context of service dog life and to each his own. All I know for sure is what a guide dog can do. Though the stationary wheel of your life seems forever stopped, your dog says give it a turn.



Disability life is life. It’s not a secondary or sub-sectioned existence. It is life. It’s life the way life is, on a day when you see the wild geese heading south and north at the same time. It’s life knowing music is cultivated time and knowing time heals nothing.

Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

One thought on “Me Before You, or, It’s Life Itself Stupid”

  1. I like this and I’m happy to hear about the new memoir! I also wonder whether people who feel death is preferable to disability are, in part, too young to know better. One of the advantages of aging, of course, is that it is gradual, thorough the discovery of new limitations is often quite sudden.

    Sent from my iPhone



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