Mr. Snuffles: Part 23 of "Miracle Boy”

A new medical problem further sours the mix. My scoliosis worsens, my atrophying muscles become less effective at holding my spine in anything resembling a straight line. I have to start wearing an uncomfortable back brace—a tailor-made contraption of hard metal and pliant, aromatic leather and other industrial materials. It sticks up around my left shoulder, which is lower than my right shoulder, that being the nut of the problem, making it partially visible under my shirt. It also pinches me painfully under the arm and on one side of my waist, turning patches of skin red and raw.

The brace maker, a tall Geppetto of a man who wears a dust-colored apron and a graying, bushy mustache, explains the chafing is caused by the brace's riding up in the course of the day. At least I think that's what he says. He mumbles with a European accent of indeterminate origin.


Mr. Snuffles, as I secretly call him, has a musty workshop on the second floor of a walk-up on the Upper East Side. Dad has to carry me bodily up the stairs. Once there, Dad lies me down on a vinyl-topped examination table, where I have nothing to do but stare at an assortment of fliers posted on the wall. "Four out of five dentists recommend sugarless gum for their patients who chew gum" one of the signs informs me. I wonder what it's doing in a prosthetics and orthotics facility. Decades later I learn that the earliest recorded example of a prosthesis is an iron leg made for one Queen Vishpla, an Indian warrior in 3000 BC, who was amputated in battle yet returned to fight again with her new hardware, according to an ancient Sanskrit text. Why isn't something like that, emboldening info about the historical importance of assistive technology, posted here? I'd much prefer a handicapped warrior to the clichéd dental-hygiene tidbit whose only relevance is a pseudo-medical connection. Then Mr. Snuffles returns with my brace, to which he's affixed two straps. "Zey go here, you shee? Shniff…," he chanters as he snaps the new straps around either side of my groin.


Within a few days my crotch becomes redder and rawer than my waist and armpit ever did. A few weeks later, my parents agree to remove the straps. Another torture device the medical geniuses think up gets the heave-ho, though of course I have to keep wearing the brace, pinchy and irritating as it is.

I hope it's true that suffering builds character.

I never complain about the brace at school. Doing so might incur pity. I pretend it isn't there, but I'm becoming ineluctably resentful of other people's freedom of movement.

The Disability Revolution Begins -- Part 22 of "Miracle Boy”

Back by popular demand--ha!--
Here's the next section...

THE BIRTH OF THE MOVEMENT THAT CHANGED THE WORLD, or MY BIG FAT ATROPHIED PREADOLESCENT BODY

 Nineteen years earlier, in 1953, at the age of 14, Roberts contracted polio and found himself unable to move, in a hospital bed, using an iron long (portable ventilators hadn't been invented yet). There, he made a discovery similar to the one I'm making in the early-70s—the discovery of a new kind of freedom. Here's how Ed Roberts describes it years later:

I decided that I wanted to die. I was 14 years old. Now, it's very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating. They started to force feed me. It was really demeaning. I dropped to 54 pounds.

My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock—I didn't have to make any decisions for myself because they were always there. When they all finally left, that's when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.

Roberts and his crew, who call themselves the Rolling Quads, are fighting against a system in which institutionalization of the disabled is still widespread. Some states go so far as to forcibly sterilize people with certain disabilities. Some prohibit marriage for the genetically disabled, for fear of procreating hereditary conditions like mine. Visibly disabled people are actually barred from appearing in public in cities such as Columbus, Ohio—Dad's hometown—until 1972 and Chicago until 1974, under what are collectively called the "ugly" laws because they target anyone perceived as unattractive, for being a disturbance of the peace.


The movement to change all this and more is rising in discrete pockets all over, inspired by Black civil rights. Closer to home, in New York City, at the very same time though unbeknownst to me, Judith Heumann organizes a group called Disabled in Action to push for equal-access legislation. If Ed Roberts is the father of disability rights, Judy Heumann is the mother. She, too, is a polio survivor and wheelchair-user. In the 1950s she went to court to win the right to attend New York public schools, and in the 60s sued for the right to teach in them. But I'm not aware of any of this at the time. I have nothing to do with other handicapped people because the only ones I've seen are the kids on the Jerry Lewis telethon or in the special schools or summer camps I'm sometimes threatened with having to attend—the ones who are treated patronizingly, as if they haven't a brain in their heads. I know I'm not like them, so I think I have nothing in common with any other people who have disabilities. ("Disabilities" is already becoming the correct word in some circles, but not mine. I'm still handicapped.) I'm ignorant that others are making or have made the same sorts of discoveries I'm struggling with.


Feeling alone in my struggle, I become unsure of myself, unsure of whether I'm moving forward or backward. At ten, I'm increasingly conscious of my physical limitations. I may even be growing slightly weaker, though it's not obvious except I don't seem to be burning calories as effectively as I used to. I gain fifty pounds between annual doctor visits. I have to buy clothes measured in "husky" sizes. With my hopelessly curly, sandy-colored hair, I look more like a sybarite Bacchus than an angelic Cupid—though whether my fatness is a cause or an effect of my growing insecurity I won't hazard to guess. Doubtless my parents split-up is a contributor.

I begin emulating Chief Ironside's grouchy, hard-boiled demeanor from TV, if not his girth. Not a pretty combination, the softness on the outside mounting an ineffective pillow against a molten hardening within.

***

The Origins of the Modern Disability Movement: Part 21 of "Miracle Boy”

A friend has written a blog article about famous people with dyslexia. Now, I know, having dyslexia is not the stigma it used to be. That's partly because so many people have it, or are related to people who do.

It's practically as common in our language nowadays as OCD and ADD -- and, for that matter, LOL. But I mean some people even go around humorously self diagnosing. "Sorry if I'm not focusing, it's just my ADD," you might hear someone say.

I've even heard people say "OCD is the new anal." In terms of describing behavior that's repetitive or fussy. Just to be clear.

Still, dyslexia is a real disability, even if some people make jokes about it and similar "invisible" conditions. I even once heard the Washington disability-rights leader Evan Kemp say that his dyslexia made his life more difficult than his spinal muscular atrophy. It made people think he was stupid just because he had trouble reading and writing the way they did.

I certainly have always felt pleased that my disability is so visible, so obvious. People may disrespect or underrate me because of it, but they never accuse me of faking it or taking advantage of it (even when I do!).

Anyway, here's the link to my friend's piece about dyslexics. “50 Famously Successful People Who Are Dyslexic”
Just one thing. Don't come back to me with jokes about Tom Cruise. I've probably heard them all already anyway.

The Birth of the Independent Living Movement

The whole idea of dependent autonomy, of being self-directed by relying on others, is a new concept that activists in Berkeley, California, are promulgating. I don't know about that at the time, yet on some level I know learning to manage my own assistants will ultimately enable me to grow up.

And marginalizing Dad from my daily life—distancing myself from his inability to accept the permanence of my disability, his hunger to uncover a cure—becomes liberating, too. I express and mask my mixed feelings towards him with a little song I make up. "Oh, my daddy, so sweet and so plump [which he never was], he looks like a camel without a hump!" It always makes Alec laugh, and Dad tolerates it. No one ever realizing the hostility behind it.

In the end, I decide my parents' divorce isn't a tragic turn but a fortuitous one, because it sets me free. Yet the ghosts of their breakup—the encroaching sense of familial bonds as stifling, strangling—will haunt me in adulthood.

***

That same year—1972—the nation's first curb ramp for wheelchairs is cut at the corner of Bancroft Way and Telegraph Avenue in Berkeley—the result of lobbying from a recently established group called the Center for Independent Living, whose headquarters I visit seven years later. The CIL is launched by a small cadre of physically disabled activists, mostly graduates of the University of California at Berkeley, with a mission to give people with disabilities the means to control their own lives, have full and equal access to everything society has to offer, and live outside of institutions, in their own homes, with the assistance of personal aides they hire and control themselves.

This is very different from any sense of what it means to be handicapped that I've ever known. It's antipodal to Dad's view of it as a mark of failure, a problem to be solved, or Mom's semi-stoic proclivity to just cope and get on with the business at hand, fighting misery with industry. It's different from my own formulation, at ten, that disability can be ignored if you've got enough character, intelligence and humor to rise above it. The independent-living "model" is nothing short of revolutionary.

Spearheading this revolution is a visionary named Edward V. Roberts, who will become known as the father of the modern disability-rights movement.

***

The Introduction of ... Barbara!! Part 20 of "Miracle Boy”

Congratulations!  You're one of about 400 people who come to this spot every month.

A silent minority, I suppose, since I rarely get feedback.  Still, keep coming, please, and tell your friends  ... and coworkers ... and enemies ... I'm not picky.

Meanwhile, a couple of points toward my marketing campaign emerged this week:

First, NPR is taking another commentary of mine, possibly two. Yay! 

Second, my editor there thinks it's likely I'll be invited for an author interview if and when this book is ever completed.


Is all this the kind of publicity publishers are looking for? Stay tuned.
Onward!


In the weeks and months afterward, I regret drawing attention to my pitifulness. The effect it has scares me a little. So I revert to type—moderately cheerful, humorously cynical, heroic.


Outwardly, my parents' separation hits Alec harder than me. The Sunday after his bar mitzvah he throws a huge tantrum when Dad has to go to Barbara's niece's First Communion, on Long Island, instead of taking us to Adventureland. "But it's my bar mitzvah weekend!" Alec keeps saying.



I go with Dad. Alec stays home with Mom, who cancels her own plans for his sake.


As for Barbara, part of the problem might be Dad introduced me to her first, before Alec. Only about three weeks into the separation, on a sticky, sweltering Saturday in late-June while Alec's away at sleepover summer camp, Dad takes me to Coney Island, and she's there—tall and thin in a yellow T-shirt and blue-jeans skirt that shows her knees, with long straight brown hair that hangs down like drapes, unadorned, on either side of her head, no makeup, and round glasses. Very 1972. She's twenty-six, a dozen years younger than Mom and nearly nineteen years younger than Dad. He presents her coyly, "my friend from the office." I like her right away, not realizing her part in all that's going on.


Late in the afternoon I ask where she lives. Dad grins. "Can't you guess? Isn't it obvious?" It isn't, to me. "With me," he continues. "We're sharing an apartment in Brooklyn." I confess to a confused sensation of shock and betrayal. A joke? I wonder.


Gradually my disbelief turns to fascination, especially when I visit their brownstone. I've never been in a brownstone before. Dad has to take me up two flights of steps.


Sure, Barbara's different from other adults Alec and I are used to. She's a lapsed Catholic, for one thing. Which is not necessarily bad. Later that year we have our first real Christmas tree!


For me, the biggest adjustment is I no longer have Dad to wash and dress me every morning. He only takes care of me on alternate weekends and holidays. Mom tries to fill in but soon finds the task too onerous. So my parents join forces to hire babysitter types—mostly rough black women from the Islands. I'm not happy about the new hired help. Evenings and weekends, when they're gone, Alec and I make fun of them. He does a hilarious imitation of fat Ena, who's from Trinidad: he waddles around our apartment muttering about "De Ba-bull! De Ba-bull!" Ena is succeeded by Elizabeth, from "Bwiddush Guyana," who hates winter. "Oh Behn! I's col' ou'side. So col' col' col'," I mimic to Alec's paroxysms of wheezy laughter.


It works off the stress of having these foreign invaders.


Relying on hired helpers is a difficult transformation, but it'll prove key to my achieving a greater degree of independence.

Learning To Use My Disability As A Weapon: Part 19 of "Miracle Boy”

Dear Reader (yes, this means you),

By now it's pretty clear. As I've said before, I am a poor blogger, social-network user, online promoter, Digger, and Twitterer. Don't really know what to do with these tools, or how to devote the time necessary to keep up with them.

So let me ask: Is once a week good enough? (I sincerely hope that's not too frequent?) No, I'm not fishing for compliments. I'm just trying to determine if more often would be better, i.e., posting new segments every few days.

I also wonder how long each segment should be.

(My teenage daughters would probably giggle here. If there is any innuendo about asking how long it should be and if once a week is good enough, then that's intentional. And if my daughters are not giggling, then we obviously haven't raised them right!)

Nevertheless, though it's been less than a week, I shall take the plunge and post another short segment. Summer is over! Time for me to get back to work on this thing!

But please do share your thoughts in the comments section below, on Facebook or by e-mail. And thanks for stopping by...

How To Wield Disability Like A Saber

The windy, early-spring night they tell us they're splitting, after an oddly solemn dinner, Alec and I fall silent, noncomprehending. Then Alec is full of questions. Where will Dad go? Who will tell us stories now? Will we still get presents on birthdays? I'm too confused for questions and stay quiet, absorbing. Let Alec do the spluttering. Until I start crying and Mom takes me on her lap. "Isn't my life hard enough already?" I say.


My words steal my parents' attention from Alec, with all his questions. Doubtless one of my goals. I've never spoken such words of self-pity before. To my mind, it's a ploy. If I push that button, play that card, I can make them take back this idiotic separation idea. Perhaps I can hurt them in the bargain, just like they're hurting us.


Mom holds me tighter. Dad wails and pats my curly head. And I see the power of words—of my words.


Whether or not I want to admit it, I also intend Mom and Dad to know that despite my well-adjusted cheerful exterior I do have frustrations even they can't resolve. It's not politically correct anymore to blame our bodies' limitations for our woes. It's better—more accurate and more constructive—to hold accountable the "oppressors": the vast, unaccepting "majority culture" of the able-bodied. Yet at some basic level people with disabilities do struggle against their own bodies. That may seem self-evident, but many in the then-burgeoning disability-rights movement minimize these frustrations. They fail to acknowledge the obvious—that no amount of societal attitude adjustment or legislated access will ever solve all the difficulties. Some of the struggle is inborn, like it or not, and unsolvable.


Why any of this would make any difference to Mom and Dad's marital situation, I can't say. But I like the lovely feeling as Mom rocks me on her lap and Dad pats me. It's clear my parents will never forget my simple statement. Besides the power of language, I learn that using other people's sympathy can be a formidable tool. My secret weapon.

***

Part 18 of "Miracle Boy”

Here's this week's installment:


… Perhaps it's not surprising my parents' marriage dissolves after seventeen years. It's 1972—practically everybody is divorcing! I'm nine years old, Alec is twelve. Dad, forty-four, is doubtless in the midst of a midlife crisis. Yet could my disability—the strain it puts on them, the differences in their reactions to it—be partly responsible? In those days, before disability-rights becomes a widespread movement, they are all alone, with no support system to fall back on, nothing but their wits and perseverance to guide them.

Before I'm born— before Alec, for that matter—Dad quits teaching freshman composition at Boston University to take the editorship of a new quarterly magazine called Apparel Arts, later renamed Gentleman's Quarterly, or GQ. The young couple moves to New York's Upper East Side. Paula lands a job at CBS television, where she works alongside celebrities such as John Houseman and John Frankenheimer. Richard Burton propositions her while she's pregnant with her first child (she turns him down), who will be named Jay Alexander—“Jay” after his late grandfather Jacob/Jack, though the family always calls him Alec.


When Paula, then twenty-five, brings her beautiful, brown-haired baby to Cincinnati to show her parents, she's greeted with faint half-smiles. "Don't you want to hold your first grandson?"


Molly has been having pains she won't talk about. With infant in tow, Paula has to drive her mother to the hospital; Sam won't go near the germ-ridden place or spend the money for gas, and Molly never had a driver's license.


She's diagnosed with ovarian cancer. Oh Lord! One of the deadliest forms, says the doctor, and highly hereditary!


Within months Molly, barely fifty, is dead. An indelible foreshadowing haunts my mother the rest of her days.


When I'm born, two-and-a-half years later—an adorable round head and sad blue eyes, with reed-thin arms and legs—I'm given the middle name Michael and Hebrew name Melech after Molly. "Benjamin" is after the obstetrician.

***

Part 17 of "Miracle Boy”

I've been off-line for the past 48 hours. I hate to admit it, but it's been a little like learning to breathe without air.

How dependent we become on our machines! Or is it just me?

Prediction: In the next few years, current modems and WiFi will become obsolete. We'll all connect to the Internet (and one another's computers) via satellites, as iPhones and such do now.

I'm tempted to make the move now, but it's not quite cost effective for me yet.

Enough! On with the wedding chapter --


Three weeks later they set a wedding date—December 27, which will be Paula's twentieth birthday.


Yet a few days before the wedding, Mrs. Plotnick confronts Everett. "If you're having second thoughts, say so now. Hurt my daughter before the wedding, not after."


It's uncanny! Has Everett let slip that he's feeling too young to be sure of anything, let alone love, and thinking Paula, though poised and self-confident, is practically a child who couldn't know what she's doing? "Don't be silly," he says.


"Come now. You can tell me. If you don't want to face Paula directly. Be a mensch."


But isn't a mensch supposed to be married, certainly by his age? It's the right thing to do. After all, to put his cold feet in perspective, he's never sure of anything.


In retrospect, their intellectual compatibility notwithstanding, their backgrounds are substantially different. Everett's family is well-to-do. His father, Jacob—whom he can't stand—is a crass, shrewd businessman. Arriving at Ellis Island at age 12 all alone, in steerage from Russia by way of England, Jacob Mattlin made his way to Columbus with nothing. He had distant family there who provided scant help, only a geographical destination. Once settled in Columbus, he launched a successful cooperage. Some of his customers may or may not have been bootleggers. Jack, as he became known, married a beautiful American woman—the daughter of a previous generation of Russian immigrants, who had grown up in the neighboring state of Kentucky—and they had two sons. When Irwin, the younger one, died at the tender age of nine from influenza, Jack and Jennie went and had another. They named the replacement boy Everett—a goyish appellation, connoting their assimilation. The Great Depression, and possibly the repeal of Prohibition, wiped out Jack's barrel business, but the scrappy entrepreneur pulled himself up again by buying property cheap. Soon he had a profitable real-estate business. The legend goes on and on. Everett's never sure how much of it's true, but he never could live up to his larger-than-life poppa. Unlike his brother Morrie—sixteen years his senior!—who played football at Ohio State and served in World War II, and would soon inherit the family business.


For the bookish Everett, having a child with a disability years later is another sign of failing to live up to some standard.


By contrast, Paula's nebbishy father, Samuel Plotnick, the germs-obsessed struggling attorney, born in Ohio to immigrant parents from Lithuania, was unyieldingly pious. His wife, the former Molly Bernhardt, of Baltimore, who emigrated as an infant with her family from Latvia, maintained an Old World stoicism. What was the use in complaining about her husband's religious strictures or the miserable, hardhanded life he made for them? This became her way in all things. When as a small child Paula tripped and scraped her knees, Molly told her not to cry. "Scrapes are a fact of life. Scabby knees mean you're having fun! Now pull your socks up before your father comes home from shul."


The message was clear: Feeling sorry for yourself does no good. Years later Paula reverts to this lemonade-from-lemons coping mechanism in reaction to my disability.


Given all their differences, perhaps it's not surprising my parents' marriage dissolves after seventeen years.

[My own marriage has now outlasted theirs by four years!  But who's competing?]