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1977. I am 11 years old. I am half-naked in a crowded hospital hallway.

I’ve gotten ten steps down the hall from the exam room where my mother is waiting before I fully appreciate that my fish-white thighs are fully on display.

My thighs are doing their best to walk the rest of me onward. The rest of me is wearing underpants, an all-too-sheer white t-shirt, and a Milwaukee back-brace.

The words, You are half-naked in public, explode in my mind like a bad-dream bomb.

Willing order onto feelings that are screaming and fleeing like raw recruits under first-fire, my mind bellows, Get her out! Get her out NOW!

I am my own inner wounded comrade. I will have to hump myself out of hostile territory.

Legs – muscles, bones, nerves, the whole platoon – pivot me back toward the exam room, while my mind is bawling commands intended to maintain unit cohesion:

Get control, get control, reinvent, reinvent, you’re not an asshole, reinvent, funny side, funny side, YOU’RE NOT AN ASSHOLE, they’re the assholes, get control — until I reach the exam room.

“I’m such an asshole,” I say to my mother, who kicks the door shut right in the startled faces outside. “And I’m cold. And I can’t believe I let them do that to me!”

How could I have let this happen? I’m not the person who lets this happen. I’m not like that.

I’m not like that.

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Before the ADA, before the Internet, before “ableism,” I understood disability largely through isolated images. 

Photos like the one above dominated the disability narrative from the time I was four until I was about 14 in the 1970s. They were the type of images I saw hanging on the walls in hospital clinics, usually outside their metal shops where I got my Milwaukee back braces.

Their sensibility and ethos taught me how to feel about disability, how to see myself in a mirror, or a peer at school or clinic, or on a telethon. How I may be an inspiration but that I will never, ever be envied.

They tell a story with a narrative about a disability subsuming a white girl, making her not so much ugly as her appearance is irrelevant, and her privacy a casual sacrifice. For me, someone with a congenital disability, it’s a narrative of perpetual civil war, making those photos of the girls with the black bars over their faces begin to look like photos taken of prisoners of war.

Would you want any part of that narrative? Would you feel like it had anything to do with who you were?

For me, the answers were no and NO, even before I could have expressed what exactly I was rejecting.  I wasn’t like that.

And, bless my own heart, I thought that rejecting this narrative was the end of it. But that narrative was insidious in its own way because it said that I – at 11! – was someone powerful enough, in control enough, to overcome an entire construct of disability. I could outsmart and evade an entire narrative history through sheer force of will. All on my own. Just by saying, “I’m not like one of those girls. I’m not like THAT.”

Well, if it were that easy, I wouldn’t have automatically blamed myself, or my mother blamed herself, for my being half-naked in a hallway at the age of 11. We knew better, after all.

But that wasn’t even the worst.

We started to doubt what we knew had just happened.

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This was what happened:

It was late in the afternoon during one of my quarterly check-ups at Newington Children Hospital’s pediatric neuro-muscular clinic.

I’d been weighed and measured, historied and x-rayed, brace-checked and adjusted long before yet another unidentified resident popped into the exam room to say the clinic was was really backed up.  Would I mind quickly slipping out of my shirt and pants, leave the rest on, and they’d check my walking. She slipped out before we could say anything and my mother shut the door.

We shrugged. We were beat. We’d been there since morning and this was the last stop on the long appointment. My mother helped me shuck off my street clothes and I waited on the exam table, swinging my feet.

The door swept open and before anyone could say “common decency,” the resident hustled me off the table, through the door, and down the hall past what felt like the entire human population, a group that I now refer to as “an ogle.”

As already relayed, I came under heavy self-esteem fire and made it back to my mother.

But there was still this to dig into:

“I’m such an asshole,” I said to my mother, who kicked the door shut right in the startled faces outside. “And I’m cold. And I can’t believe I let them do that to me!”

She was opening her mouth when the discreetest of knocks broke in. She grabbed a drape and wrapped it around me.

My neurologist poked his head in. “Everything okay?”

My mother said, “No. Everything is not okay.”

He turned to let the crowd in with him. My mother was past being cross. “You,” she stuck her finger at him. “Just you.”

I didn’t envy him. He’d already seen The Finger. Now he was going to get The Look and The Voice.

His expression was concerned. Ordinarily I didn’t have a problem with him. Sometimes he was a little too hale and hearty but he answered my questions comfortably. In hindsight, I’d see he was much better at talking with me than many of the doctors I would have as an adult. Now, though, I stared at him critically. The part in his hair was a little too sharp; each jet black strand fell into place too neatly. All in all, he was just a little too smooth.

Let my mother have him. I crossed my goose-bumpy legs under the drape and prepared to enjoy the show.

“I was a little concerned about the left side,” he said in a I-know-what-you’re-going-through voice.

My mother was not having it.

“I’m not the slightest bit concerned about her left side right now. Do you have any idea why I — why she” — a gesture toward me — “would be upset at this moment?”

His expression was troubled, but confused as could be. I started to feel a twinge of doubt.

“I’m sorry, I don’t. Please tell me,” he said. “What has happened?”

My mother’s outrage, like my own, was deflating under the subduing weight of honest bewilderment. If he had been a bully, she would have pushed back; if he had been a fool, she would have lectured him.

He could have been both but his manner and his face were sufficient concealment, and besides, we knew he wasn’t a bad guy.  He wasn’t like that.

If he could be so totally unaware of such an obvious wrong, where did that leave our judgment that it was an obvious wrong?

My mother told him that I had the same need for privacy he had and he was to show me the same respect he would expect. And if I were less than fully clothed I would not be leaving the room.

He said, “Of course,” and they left it there.

When we were in the car going home later and my mother was apologizing to me for being so stunned by their colossal insensitivity — “I should have realized those idiots really would parade an eleven year-old girl up and down the goddamn hallway in her underwear,” — that she didn’t yank me back into the room, all I wanted to do was show her I was okay.

I said, “Hey, I take this kind of thing in stride,” and we laughed. She was still uneasy but by then I was covered up and decent again; she had done her part to tell me what they did was wrong and I had done my part to be the kind of person who could rise above such things.

This wasn’t a perfect story of my mother being a perfect advocate. Both of us were embarrassed. Both of us felt like failures.

But we had each other and this was the best we could do for each other. Because there wasn’t a narrative that taught my doctor how disabled 11 year-old girls feel like assholes when they find themselves half-naked in public.

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Disability narratives, like all narratives, are the stories that cultures and their systems tell about themselves.

Narratives are an ordering mechanism that provide structure, which is part of why they’re so important. They help me – an individual – figure out my role. But if I don’t like the choice of roles, if I don’t want to participate in any of the narratives on offer, I’ll have a vastly better chance of finding alternatives through community than I will going it alone.

The narratives I grew up with, as many people still do today, reflect the distance at which we still keep disability. It’s the knee-jerk reaction – “I may have [disability or health condition] but I’m not like that.” As much as I wish it were otherwise, even saying the words, “I’m disabled,” is usually a destination, not a starting point, and a narrative that many people will simply not choose for themselves.

But because disabled people have built community, more 11 year-old girls now know that it’s not all on them to somehow craft a sense of self and a story that feels true to all they are. The images and the stories that they tell are no longer limited to white girls with physical disabilities. The ADA, the Internet, and an increasing focus on ableism (versus disability itself) are some of the hard-won tools disabled activists, other writers with muscular dystrophy, and bloggers have used to change systems and build new networks. As a result, narratives have changed and will continue to evolve. Being like that will keep becoming a better and better thing.