Updated: Oct 11, 2021
[adding on 10-11-21, a long-buried Polaroid pic of baby Roger in my lap, that I think Patty took; this would have been 1983]
[original post from April 2021]
Pondering how an absence of certain challenges, in our own lives, makes it tough even to perceive that some people do have those challenges.
How growing up White in America in the 20th century, I didn’t understand how some of my teenage friends would be deemed suspicious, just for walking into a store. I wouldn’t have experienced that, even at ‘the mall,’ which used to be a thing, a place to go, with your friends.
(If a group of us were out together, my Black friends would be given the benefit of the doubt because we White kids were, well, White, and with them? I did not even realize that possibility at the time.) Only some years later did I understand we didn’t all benefit from a shop-manager’s trust, on sight. So personally, I didn’t carry that suspicion in any mall, walking in as a “threatening” teenager, through no effort or value of my own. I would have to have been not-White, even to feel that difference.
Or how a parent’s sustained mental illness and lack of income, or vascillating income, can subtract “basic” needs in childhood, so that adults who didn’t lack them can’t imagine anyone lacked them, or how that mattered, and might still matter, in a compounded and exponential way.
(I’ll save for another day how being not-a-woman means an absence of barriers.)
Or how, in considering my own absences and privileges, I take for granted my lack of a whole dimension of challenges, plain as the nose on my face.
How easy to take for granted, the ease with which many of us move through the world, with an absence of worry about stairs, flights of stairs, or hard curbs, or door pulls? Trying to negotiate a street without being able to hear sound, or to see an approaching car ? How recent, the fundamental civil right to access a building or public space, as a matter of law.
In the early ‘70s, the “medical model” still presented a person with a disability as personally defective, abnormal. Freakish. Trapped inside, in unearned shame, even secrecy. (In parallel, the “psychiatric disorder” of homosexuality at the time.) The general posture: Why should “we normal people” have to redesign the environment in which we (all) live?
In the late ‘70s came the Section 504 Sit-in. (That part of the Rehabilitation Act of the early ‘70s wasn’t being enforced.) How could American businesses and towns ever possibly afford to retrofit or install features like elevators, ramps, larger bathroom stalls?
The posture: What, rip up every corner curb? For people with “defects” like needing a wheelchair to get around? (If you're not yet getting mail from AARP, these attitudes surely sound medieval. They're hard to believe even if you were alive in the late '70s.)
“504” gained meaningful traction, ultimately, only because much of America watched the sit-in reportage on TV, after a network outage. (Please watch the documentary “Crip Camp” on Netflix, nominated for an Oscar this year.) The world of barriers then got a bit better, but hiring and employment practices, not quite.
When the Americans with Disabilities Act was in debate in 1989-90, I worked for a national, not-for-profit association of businesses, some small, others quite large. Regarding ADA, they – like businessmen all around the country, and, I guess, in any capitalist country – wondered how in the world they would be able to accommodate, for example, an employee with blindness, or one who needed to use a wheelchair, with only existing stairwells?
I really do get how ‘businesspeople’ need to consider their bottom-lines, to consider all their employees, and their dependents. And how the absence of literal space for everyone (and everyone's potential contributions to their business) made for blind spots, in hiring. And I can only imagine how it felt, and still may feel, as someone "invisible" to job interviewers, please just consider my talents, give me a shot? Because an office building had no ramp to its entrance. (Please watch "Crip Camp.")
All this does feel downright medieval.
I know I did not appreciate the lacks, the absences, the denials, of many potential friends, classmates, colleagues, because the built world, and common attitudes, had not made room for them.
Everywhere I lived, growing up, we had a neighbor, either right next door or right across the street, a child growing up with “defects,” according to school-systems and civic associations, and the greater culture at large. I would ask my mother, “How come [Steverino, or Mary] can’t get on the school-bus with us?"
I heard “they” had “other” places to go, apart from me and the rest of our neighborhood kids.
Dr. King’s words, “The arc of the moral universe is long, but it bends toward justice,” have felt ever truer in this past year or so.
How easy it still feels, to forget, ignore, deflect, minimize, what any majority does not experience?
My bro-in-law Philip is an Equal Employment Officer at the Pentagon. He sits in meetings where they come up with ‘great ideas’ like ‘let’s create a sound-signal that alerts everyone to another imminent (9-11-like) attack.'
Philip then asks, “And how will our deaf employees hear that new sound-signal?”
I am so grateful to know him. Born with one arm in the late ‘60s (thalidomide, for mother’s morning sickness, now again a ‘miracle drug’ for conditions like Hansen’s disease - leprosy). For his childhood subculture of small-town factory workers, that 'deformity' meant he would never work. How would he ever get a job, what would ever happen to him? That's all they knew, that a job required two arms, two hands.
His job (using his brain) is a gift for decision-makers who can’t imagine sensory or physiological absences, in a small-town named Pentagon, of ~25,000 persons. (Even though that town includes many veterans, with varying built-world challenges ...)
When I think of the kids I knew and loved at a Children's Rehabilitation Center, where I worked during and beyond college, I hope for them just-as-meaningful and self-fulfilling work, in their adulthoods. I know they didn't all make it to adulthood, but I hope I could also be surprised by some who still live and love and create, today.
There and then in that Center, I appreciated my own healthy childhood, and the absence of an acute or chronic condition or illness for a brother or sister. At 19, I also understood how I could have benefited to have had such a sibling, like any one of these kids, from birth to 21.
My prospective boss, Nancy, took me through the Main Hospital’s children’s unit as part of my initial interview.
She stood, just watching my face and body language. I introduced myself to a boy with a “halo” (steel-driven post-brain-surgery apparatus) around his head, then a boy with Cerebral Palsy (who soon drooled ropes of saliva onto my forearm, which I really didn’t mind because I knew he would prefer not to but had no control over it, and it was just drool, which we all produced, so) and a girl with a seeming cough and congestion (but whose Cystic Fibrosis I would not yet understand, even though my hallmate Liz had died of the same, our first year of college). I learned their names, and what they were learning that day. It didn't feel like a job interview.
So much a better fit for me during college summers. Before that, I'd worked as a “cosmetics lady” at the Charlottesville Woolco, knowing zero about cosmetics, anxious from the moment they put me to work in that department. Women would ask me what color of lipstick they should buy. Once it occurred to me to ask a certain question, I always answered with that question, "What's that shade you're wearing right now? It looks nice, and it suits you," Whether they needed a new tube of the same color or not, they walked away fine. And I could tell myself I had done no harm. But that job did feel like labor.
After college, during my "grace period" for student-loan payments, and after I’d hitchhiked and rail-passed around Europe, I worked again full-time in the UVa hospital's multidisciplinary center. Children arrived after some trauma and initial emergency care or recovery, or periodically for some chronic or progressively degenerative disease or condition. Any one child might stay for a week, or three months, or one month every summer, their day filled with PT, OT, RT, school, maybe nutrition, maybe speech therapy.
I worked in the "school," which became a school for me. I hadn't had the opportunity for relationships with children like I had there, even with kids I'd babysat and loved, even with siblings younger than me, whom I loved, in my own growing-up household.
Whatever brought a child to the CRC wrapped a kind of safe-room around him or her; everyone under that large roof was there to support them, to see them and know them as they were.
And under that large roof, each child's safe-room could be with other children in their safe-rooms. Their relationships were meaningful to watch grow, and thrive. At age 8 or 13 or 18, many children had a deeper understanding of life and death than most adults. They knew their safe-room friends, possibly they themselves, might not live to see age 25.
Cystic Fibrosis was a tough one. What would you do, if you’d managed to be born and almost to grow up, but knew, by high-school, that the best of modern medicine gave you only a few years more to live? This, through no fault of your own, just because both your parents had a recessive gene that meant your own body produced too much mucus?
And that during the years you did live, you’d been malnourished, fighting infections and struggling to breathe or eat without pain? Meanwhile, spending recurring chunks of time in a hospital?
How would you live with the unfairness of it, the anticipatory freight of your own end-of-life, when you'd barely ventured into adulthood? You’d find whatever coping strategy you could muster, with or without social, family, professional support.
One teenager at the Rehab Center handled it this way:
Knowing 1st-World adults – like American men and women -- feared the antithesis of her own scrawny CF body. I heard her ask random staff, daily, “Have you gained weight?”
The fleeting panic on their faces (Oh my god, have I? Do I look fat?) would at least offer this girl a reprieve of schadenfreude (literally “harm-joy,” taking pleasure in others’ misfortunes). This particular teenager would watch that fleeting panic and try to mask her smile with a practiced nonchalance.
I could see the internal kick she got, after she asked me that question, then an hour later, asked a nurses’ aide the same, then her OT. She could “win” those few moments of non-verbal reaction, before she lost her whole life. And who could blame her?
I didn’t blame her for one second, even as I wondered if I really looked heavier. (Oh, shit! for another day, another blog.)
I was living with the unearned gift of not knowing how long I had, to be alive. Fair or not, at 23 then, I was still alive and free to delight about life, daily.
Another teenager with CF retreated into himself, all his anger and crisis condensed into what seemed like self-loathing. Clinical and therapeutic staff had trouble engaging him in any activity. All I’d heard? The kid had come to refuse his parents’ religious faith in a (pain- and mucus-free) afterlife.
In our one-room schoolhouse, where I had to figure things out differently every day, depending on the individuals there, he sat with his arms folded. He wasn't even looking at the cover of his textbook.
I walked over and whispered, “What would you rather do?”
Shocked at first, he finally mumbled, “Draw.”
I found a tablet of sketch paper and some colored pencils and left him alone.
When school was over that day, he didn’t exactly smile at me. And he never showed me his drawings. But he looked visibly relieved for once, not to have been pressured into doing whatever Algebra or Chemistry his home classmates had to do. Which were pointless, given his “lack” of their average life-expectancies. He could justly ask the question of his Algebra or Chemistry teachers, “When will I ever use this?”
Knowing he had drawn whatever he wanted to draw, for a couple hours, helped.
I mean helped me, too. What the heck did I know about anything? What more could I hope to do? To be in a position to let this one kid take a breath, make a single personal decision, then make something, anything, out of everything he felt?
I trusted those couple hours of secret art-work, his true job, might feel somehow portable, after his discharge. Maybe even sustainable, however long his work-life.
Freudefreude? Sure. Way more fun to take pleasure in another’s pleasure.
(Exhaling even to remember, in 2021. Same as it ever was, pleasure in another’s pleasure.)
That seemed my true job there, at the CRC. Despite the title Teacher Aide, I was a Kid Aide, Birth to 21. The teachers didn't need me like each young patient did. Lowest paid, and most meaningful, job ever.
To hold an infant, born without “innate” reflexes, who would never progress to pre-school, who might not survive past year 1, and whose parents had “checked out”? Talk about absences, talk about taking anything for granted.
Like little Roger Roundhead* (as I’d named him), who wasn’t held in anyone’s arms much, throughout the long days of his short life? Holding just that one baby for half-an-hour every day might still be the most meaningful work of my life. As I keep surviving through 2021, I think about holding one infant with No Suck, No Root, No Grasp. I think about rocking him, cradling his head as he had a seizure in my arms, his own arms rigid for long seconds of a half-hour.
Any infant needs to be held. The minimum wage for that "work" is priceless. Any teenager, especially one with a death-sentence looming, needs to express himself, somehow and someway, with a sketch-pad or a knowingly snarky question.
Any 14-year-old, who had saved her siblings’ lives by holding up a burning staircase wall -- so they could escape, even if that meant she would live ‘in-house’ in Jobst-skins, for many months, trying to keep growing up -- needs to feel any connection with another person who appreciated whoever she just was. Now remembering she would come and go, irregularly taken out by family, Against Medical Advice.
Oh, Karen H. She had run back into her house, once herself safe, to hold up a burning staircase wall, so her younger brothers and sisters could escape. She had caught fire herself, but she held the wall.
In doing so, Karen had lost the skin of her torso, all her hair and scalp, most of her hands and facial features. Her Jobst-skin head cover had holes only for her eyes, what remained of her nose and mouth.
Neither she nor anyone in her family attended any school for very long; they moved frequently in westernmost Virginia. They moved to wherever the father had found work.
School was not the priority. The family’s staying together was the priority.
More than once, the father and older brother came and took Karen away, against doctors’ orders. Staying together after the fire was even more important than their burn victim’s treatment and care, even more important than the “frog-people pictures” that desperate house-staff would show them. (Burned skin doesn’t know how to grow back along the same skeleton; it makes flaps and wings of skin, trying to grow back however it can, if amphibian.)
This girl was painfully anti-social, even called “surly” and “disagreeable” by the nurses in staffings. Karen had not experienced much in the way of success.
“Not much in the way of success, to date, with this one,” they'd say. (Not much, I'd think, beyond saving her family’s lives.)
Any of which courage she seemed to dismiss or refuse. I found her amazing, if not communicative. (Later that year, President Reagan would present Karen with a Young American Medal for Bravery in Washington, D.C.)
One of the teachers had told me 14-year-old Karen was reading at 5th-grade level after another assessment and IEP. Would I mind giving her some attention? (The special-ed teachers often left me alone to run the one-room schoolhouse, while they found quiet places for another one-on-one assessment.)
A 9th-grader reading at 5th-grade level. So I found a textbook for 4th-graders and sat down with her. Because why not give her a few moments of accomplishment, for crying out loud? Also, no one in that Center cared about a Teacher Aide’s specific decisions in School. Sometimes all I did was rock a baby for half-an-hour, right? So I could make such decisions, invisible as I was. (Not a criticism - they all treated me respectfully -- I just occupied a very low rung on an unstated hierarchy. )
“Take turns reading paragraphs?” I said.
She nodded. I opened the book to a random page.
Karen struggled through her Jobst-skin mask to sound out the words. She would try to read only one sentence, then say, "your turn."
One story concerned a magic trick about balancing a coin on one’s nose. We plowed through the text in turn. As we worked through the chapter, she seemed buoyed by reading aloud, and thoughtful when I tried to dramatize a scene with my voice.
At the end of this magician story I told her, “Boy, I couldn’t balance a quarter on this honker of a nose.”
I looked right into her eyes, pointed to my beak of uncertain and mutt-based ethnicity. I smiled, nothing else to do.
Karen made a snuffling sound. I could see her, laughing.
Laughing! Wow, I thought. This was new.
What stunning blue eyes – like they’d only just appeared before me. (When we’d passed in the hallways before, she’d mostly looked down at the floor.)
She said, “I can’t balance a coin neither, ‘cause I don’t have a nose.”
After a beat, we both busted out laughing. Like ugly-crying-laughing, both of us. Didn’t even have a nose. (Absence - sweet Jesus.)
The curious sound of Karen H. (sorry, is that laughing? around the room) turned the heads of all the other teens.
Karen, the 14-year-old whose life had so sucked, and so didn’t give a shit about having friends, ever since her house caught fkn fire – maybe before that; they moved around every few months. She stared right into my own, not-much-older but goldgreen-brown eyes-depending-on-the-light dark-brown-dark-eyes, with a partial life behind me.
Only then did I understand:
1) she had never laughed – or thought to laugh -- about her missing nose, or ears, or fingers or other parts, and
2) it felt great to laugh about all the awful, just for a single moment.
The whole thing was absurd. Her family’s house had caught fire during the night. Her mother had died, maybe a younger toddler, too? Most of them lived, because she turned around at the front door and went back to hold up the staircase. It was all, even, gratefully, laughable.
Soon after, a nurse’s aide came to fetch her. All I could hope: she wasn’t needed in the tank, where they soaked and scoured away the burned, dead skin, a necessary part of the healing process.
(That sound, horrific, however necessary. I could identify each screamer.) I thought, oh please let her snuffling laugh last just a while longer? Let her hold onto that, please, scouring-skin good people?
From then on, things were different between Karen and me. I felt privileged, even amazed, to have been with her in that moment in the schoolroom.
She wanted to hear stories, and to feel alive.
And there I was, another chick like her, with a coin-to-nose-balancing problem. Mine, a presence; hers, an absence.
After that day, Karen H.’s blue eyes looked back at me whenever we passed in the hallway or cafeteria. We would nod at each other. We had met each other.
Maybe she could trust someone, I wondered, hoped? What an amazing gift, just the thought of being anyone’s someone trustable. And how I needed that, to meet someone trustable.
I still think about Karen H., decades after my college and post-college days. Winner of a Reagan Administration award. For bravery. Unbelievable bravery. Her own life and limb – and very nose – nothing as important as any part of anyone she loved. She was, and is, my hero, many decades and zip-codes later.
Not so much for the meet-the-President-bravery of it all. More for the Karen H. who knew who she was, before and after that night of the fire. She remained unapologetically herself, even if the other teens, or the nurses who cared for her, didn't care for her because she didn't care if they liked her or not. She knew who she was, and when she met someone who might just know her.
The things I took for granted. My mockable nose. (Slightly older boys mocked me for my nose, starting in 8th grade. Our junior-high mascot was the 'Warrior' -- a Native-American profile painted on the gym floor. "Looks like you, little Mary Donovan!" Hahaha.) Took for granted being ambulatory. Having two arms, two hands. A nose, at all.
Without needing re-configured curbs, or language translation, or an elevator, or a hearing-impaired visual signal, or a vision-impaired audible signal. Those needs may come, in due course, but as I write, I can take all that for granted.
What else have I not appreciated as privilege? The arc is long, but still bending, and toward justice and morality.
I can only hope I keep meeting teachers, young and including students, who bend my absences into compassion. Bend my relationships into knowing who they are, however they are. Which is lesson enough and entire.
*Roger Roundhead -- this baby had the roundest-shaped head I've ever seen on a human. Like Charlie Brown. I would look at and touch his head, amazed. I would think of Patty, the Infant Educator, tapping her skull after testing him and saying, "Nothing. Noth-ing."
I would wonder if, just to be born, with reflexes considered innate, did our brains and heads need to be misshapen, a skull visibly 'imperfect' in its not-roundness? And how was it that this infant boy's not-not-roundness had merged with his spirit, to live such a short and seizured life? A life I had the outrageous good fortune with which to coincide, on this planet?
None-the-wiser about any of it.
So grateful to have known Roger, and been able to rock him, with his round head on my shoulder, just one of my many, many teachers, over many decades, now.
P.S. I don't have many photos of my days there, only a handful and mostly of the special-ed teachers. No camera-in-the-pocket back then. But all those individual children, even if I'm not clear on their names now, all their faces are locked, with love, into my mis-shapen brain.