Disability, Cub Scouts, Performance Theory, Pity Amber, etc.

Only Bread, Only light

I talk often with my friend Bill Peace “Bad Cripple” about living through childhood and adolescence before the Americans with Disabilities Act. Bill was a paralyzed kid. I was blind. In those days (the 60’s and 70’s) if you had a disability, you really had to invent yourself. One may argue as performance theorists do that all social life requires invention, or as Richard Schechner said: “Performance’s subject [is] transformation: the startling ability of human beings to create themselves, to change, to become—for worse or better—what they ordinarily are not.”

Disability is no different, save that living one’s most impressionable years in a strictly “normative” culture created tremendous pressures for the disabled. One could say we had to invent ourselves quickly and while our inventions could be good or bad, they were always vitally necessary.

Because my parents could only imagine me living on normative terms they taught me to parade wildly in the streets. In 1962 I joined the Cub Scouts and received a uniform and a flag. I marched without seeing in a small town parade, stepping in time with the older Boy Scouts and their drums. I held the flag straight out in unseeable mist. I was surely living and walking by the world’s terms! Although the Cub Scouts adopted a platform to include boys with disabilities in 1957 the word hadn’t trickled down to our little New Hampshire town. Without irony, the Cub Scouts motto back then was “be square”.

What a phrase, “the world’s terms”—as if the planet might be some wild Olympian god. “I like you now,” says the God. “Now I don’t like you.” This is the capricious difficulty, the dance of rejection and occasional reception all disabled people know. We aim to avoid it. This is inherently a performance of failure.

Ironies proliferate where physical differences are concerned. If you think too much about them you’re impeded, or worse, you’ll stop all momentum. If you don’t think about them you’ll fail to grow. “Who am I?” should always be answered by acknowledging our physical lives as much as say, knowing one’s ancestry. But in 1962 the Boy Scout parade wasn’t the place to learn about dignity and pedigree. There wasn’t a chapter in the scout’s handbook about successful blind people—an acknowledgment of Claude Monet’s lily murals or Horatio Nelson. Who am I? I’m a blind painter, a one eyed admiral. I own this place, this Musee de l’Orangerie in Paris or a 104 gun ship named Victory. As a boy what did I have? I had “Mister McGoo” that doddering cartoon blind man who walked off cliffs. A fool. The inspiration for school yard taunting. I was McGoo. “How many fingers am I holding up?” Never never think about your ruined sight, your faintly cross-eyed little face—think of what a preeminent able bodied person you will become some day.

That’s how it was. But the greatest irony of all was that the 60’s, a decade when the youthful president exhorted everyone to ask what they can do for their country became instead a time of individual vigor.  JFK loved the word “vigor” and even the Cub Scouts got the message. And so children born long before the Americans with Disabilities Act were encouraged to get in the game, by sheer will, with toughness, but not necessarily with self-regard. It was possible back then, as it is today, to be spirited but not to like yourself.

I used to do wild stuff. I ran across the steel railing of a suspension bridge. You think I’m Mr. Fucking Magoo? Watch this! No one else tried it. On the plus side: I didn’t think blindness would lead to my demise. On the down side: I had to be reckless as I dragged a long shadow of self loathing.

Richard Schechner once listed the essential purposes of performance:

• To entertain

• To make something that is beautiful

• To mark or change identity

• To make or foster community

• To heal

• To teach, persuade or convince

• To deal with the sacred and/or the demonic

In the tough years before the ADA these functions were different for kids or adults with disabilities—but especially for kids. To entertain meant walking the bridge. Very few of us knew how to make something that was beautiful though we sure thought about it. To mark or change identity? What was that? The disabled kid was too busy being seasick, blindly walking in the parade. Community? “Healing?”

Teaching, persuading, or convincing was pre-ordained for crippled kids—were were inspirational. We were the ones who knew Tiny Tim personally. We were precious but inexactly and contextually so—poster kids come to mind, “Jerry’s Kids”.  We were frozen in the culture’s pity amber.

As for the sacred and demonic, my sense of the world was always marked by receptive or hostile locations. In an actual church I was “pity boy”.

If the past has been transformed by law and art, and certainly in some ways it has, then we must decide as a society to say it’s so. We are not living in the 60’s anymore. Let’s all say it. Let Bernie Sanders or Hillary say it. Let’s declare all public space is now and henceforward inclusive. Is this any more reckless than running a high railing? Oddly, it often feels the same, at least on the inside.

Reading Bill Peace’s blog yesterday entitled “Cripple Radar and Ableism” I came across the following list of ableist “teachings” or “doings” that still routinely afflict the disabled:

The mother who pulls their kid’s hand in the supermarket and says “watch out for that wheelchair”.

The secondary school that transports every child with a disability via one short bus.

Handicapped seating that is substandard and located in one less than ideal place.

The restaurant cripple table. One table is always used to seat a person using a wheelchair. If occupied I am forced to wait despite the fact other tables are available.

Locked accessible changing rooms in clothing stores.

Anything and everything associated with being deemed “special”.

 Paratransit systems that invariably provide inferior and unreliable service.

Side, rear, or locked entrances to buildings.

Inaccessible poling stations and voting machines.

The framing of disability as “other” is still a dominant social dynamic and in a society that’s increasingly penurious—in an age of non-investment in infrastructure, one senses how the disabled are all too often framed as beseechers, pests if you will, for this is a tight economy we’re running, we can’t afford accessible polling stations or accessible bathrooms. Don’t you understand? We can’t afford you. Lingua franca, taken as metaphor, taken as idiom, taken as prevalence says: “you’ve ruined the meeting.”

I’ve gone many places with Bill Peace. He has his wheelchair, I’ve got my guide dog. We enter a restaurant. There’s always the quick glance of the hostess, that funny sidelong prey animal eyeball roll that says, “we’ve got a problem…two cripples…God! Will they drive away our other customers? Do they have something catching?”

It’s rare when we don’t get this reception.

And so it’s not the 60’s exactly. But oddly, fractiously, maddeningly, we’re still forced to perform like the kids we once were.

How do you like my pity amber?




Author: skuusisto

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

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