I remember this:

I am eight. I am waiting alone for the little bus inside the doors of my school, White Sulphur Springs Elementary, in the Catskills. I glimpse a small girl not  far away – tired, leaning against the wall like it was holding her up. Seeing her, I feel a sorrow for her. The sorrow is bigger than me, it blooms out of my stomach and swallows me whole like a monstrous flower.  In the next instant, I see that I’m looking at myself in the reflection of a display cabinet’s glass doors. I am angry at myself – first, for letting myself look like that  – then, for looking like that. Then I know that I will never be faster than seeing is. It can get even me. This means that while I’ll empathize with strangers who feel sorry for me in decades to come – having done it myself – I’ll want them to snap out of it, too – as I did.

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I’ve been the only (identified) disabled student in my classes in five schools since first grade, I see children “like me” at this clinic and on tv once a year during a telethon that makes me cringe. That’s it. I have a pronounced lack of images to work with and an inability to decipher the ones I do see.

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I am eleven and it’s early in 1977. We have moved three times since the Catskills.

My mother and I are at the end of the long day at the MD (muscular dystrophy) clinic we go to every three months at Newington Children’s Hospital, mostly to keep tabs on how my scoliosis is progressing.  My neurologist and orthopedist – the headliners who close out the day – have just said, “Now let’s have a look at your walking.”

Under the assessing gazes of residents in pediatric neurology and orthopedics, and a gaggle of curious students, I set out down the bright and  windowless clinic corridor in my stocking feet, wondering if a person who has trouble walking in the first place ought to be tested in socks on a shiny linoleum floor.

They know what they’re looking for. They note the high-stepping gait that accompanies the foot-drop; how the young female patient keeps her shoulders raised and uses her arms for balance; how this case involves a body listing to the left because the right side is stronger; how, curiously, the right foot is rotated out, torquing the leg and giving the walk (in my non-clinical parlance) a gallumphing quality.

I alternate between watching where my feet are going and inadvertently spying on people in exam rooms with open doors.

These glimpses are blows too fast to dodge; they’re glimpses of people who slump in what appears to be exhaustion and sadness. Sometimes I see kids closer to my age or maybe in their twenties. There is always someone parental in the room. It is rare to witness conversation, let alone laughing. Was this how my mother and I appeared to others?

I am coming up on the alcove where x-rays are viewed by clinic staff conferencing on the run. I reach this turn-around point when an unexpected sound so startles me that I nearly slip.

There is a young man – a grown-up, to me – with bushy brown hair in a motorized wheelchair, laughing hugely and hoarsely. Apparently whatever he had said just prior was rip-roaring because the residents huddled nearby burst into equally raucous laughter. He rocks back and forth, grinning evilly.

I stare, and my stare is the kind of stare directed toward surprising objects, not people. It is embarrassingly articulate. And it blurts, You, laughing?

I freeze but not before this young man also sees me look away ashamed. The look in his eyes is a disgusted, Yeah, well, what are YOU looking at? Or so I think. I don’t know this young man or anyone like him. Or me. I’ve been the only (identified) disabled student in my classes in five schools since first grade, I see children “like me” at this clinic and on tv once a year during a telethon that makes me cringe. That’s it. I have a pronounced lack of images to work with and an inability to decipher the ones I do see.

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I don’t remember this:

Right around the time of this clinic visit, disabled political activists occupied a federal building for 26 days, the centerpiece of coordinated direct actions that ultimately forced HEW Secretary Joseph Califano to sign the Section 504 regulations, the first federal disability civil rights law in the US.

I don’t remember this because I didn’t see any of it. Much of it occurred 3,000 miles away from me and during a news strike. When I went to college later at the American University in the 80s, there was never any mention of disability as a political issue in my political science or American government classes.

By 2017, the 40th anniversary of 504, disability rights were included in the Smithsonian’s exhibit,  American Democracy: A Great Leap of Faith, about citizen participation in the forming of the US.

The disabled protesters made history. But it remains a comparatively untaught one, depriving disabled children and youth of their rightful sense of belonging to one strand of democratic history.

It may not be true for every young disabled person, but learning how to see disability in both medical and political terms would have helped me learn how to be a disabled grown-up – one I wanted to be. I could have forgiven myself for looking sad and tired and confused had I seen that I wasn’t wholly responsible for feeling that way, or for figuring out how to see others.