Pro­pri­o­cep­tion

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It has hap­pened in lit­tle ways since he was born: a twist­ing and flut­ter­ing of the hands, wav­ing of the feet, mouth work­ing into and out of a lop­sided, stretched-out O. Ex­cite­ment also an­i­mates his lungs, as though his breath has a life of its own. I hear these minute gasps com­ing from the back­seat of the car and look in the mir­ror to see him bounc­ing around, his gaze up­cast, his face an oc­ca­sional smile. When he was an in­fant it was hardly no­tice­able, but now, as we inch to­ward his third birth­day, it has be­come some­thing at which peo­ple stare. Even if no one stared, even when it is just the two of us, and though it’s been hap­pen­ing for some time, watch­ing him do it is painful. When he flaps and kicks and gulps at the din­ner ta­ble, we try to bring him back to us, hold his hands on the ta­ble and tell him to calm his body. Of­ten we give in to books and puzzles and the ipad, which some­times fo­cuses him and some­times just makes him crazy, es­pe­cially if it’s Bert and Ernie and off he goes, danc­ing away. Would you try to feed a per­son who was do­ing aer­o­bics? Some­times we have no choice, and some­times, like last week, when he un­in­ten­tion­ally sucked a mouth­ful of unchewed pasta down his throat, it ends a meal. Though I know I’m not sup­posed to, I’ve long thought of these episodes as “spaz at­tacks.” The term stuck with me af­ter I read it last year in a young adult dis­abil­ity novel in which char­ac­ters with cere­bral palsy re­fer to them­selves as spaz­zos, ap­pro­pri­at­ing per­haps per­ma­nently a word our cul­ture has done its best to re­de­fine. The Ox­ford English Dic­tio­nary dates the first use of spaz to 1957, when it was used in In­di­ana by the Ham­mond Times news­pa­per: “Jew­el­ers, fur­ri­ers, and fur­ni­ture deal­ers go through sim­i­lar mer­chan­dis­ing tor­tures when­ever Wall Street spazzes.”

spaz, v. slang (orig. U.S.). Of­ten con­sid­ered of­fen­sive. intr. To lose phys­i­cal or emo­tional con­trol, usu­ally as the re­sult of an in­tense emo­tional ex­pe­ri­ence; to act in a bizarre or un­char­ac­ter­is­tic way. Freq. with out. Also in ex­tended use.

Mer­riam-web­ster’s Col­le­giate Dic­tio­nary, Eleventh Edi­tion, puts it at 1965:

Spaz, of course, is short for spas­tic, which has been around for cen­turies. Web­ster’s traces the etymology—latin spas­ti­cus, from Greek spastikos (“draw­ing in”)—to the year 1753, and Ox­ford agrees:

spaz., n. slang: one who is in­ept: KLUTZ

spas­tic, adj. and n. A. adj. 1. a. Pathol. Of the na­ture of a spasm or sud­den con­trac­tion; char­ac­ter­ized or af­fected by spas­modic symp­toms or move­ments. b. spec. in names of spe­cial ail­ments. spas­tic paral­y­sis, a con­di­tion in which some mus­cles un­dergo tonic spasm (some­times re­sult­ing in ab­nor­mal pos­ture) and re­sist pas­sive dis­place­ment, so that vol­un­tary move­ment of the part af­fected is dif­fi­cult and poorly co-or­di­nated. 2. Per­form­ing in­vol­un­tary con­trac­tile move­ments. 3. a. Af­fected with spas­tic paral­y­sis. b. In weak­ened use: un­co­or­di­nated, in­com­pe­tent; fool­ish, stupid. slang. B. n. a. A per­son with spas­tic paral­y­sis. b. In weak­ened use, esp. con­temp­tu­ously: one who is un­co­or­di­nated or in­com­pe­tent; a fool. Cf. SPAZ n. slang.

A spaz at­tack, Google will tell you, “is when some­one is phys­i­cally out of con­trol and just freak­ing out.” Ya­hoo mes­sage boards, ever help­ful, add this: “With some peo­ple it’s hav­ing too much sugar and caf­feine, and to oth­ers it may be a seizure.” Ur­ban Dic­tio­nary says it’s “a sud­den freak­ing over an event or sit­u­a­tion that 99.9% of nor­mal peo­ple would con­sider to be un­event­ful.” Or: “a ges­ture where you fling your­self wildly, shak­ing from head to foot. Can come on ran­domly or be planned. A spaz at­tack is the great­est of all come­backs. Very fun in a chem­istry les­son.” Other things you learn from Google: Tiger Woods re­port­edly used the word in 2006 (“as soon as I got on the green I was a spaz”), caus­ing an up­roar in Great Bri­tain but lit­tle re­ac­tion in the U.S. There’s an in­ter­est­ing post about this by Ben­jamin Zim­mer on Lan­guage Log, an on­line com­pen­dium hosted by the Univer­sity of Penn­syl­va­nia. Ac­cord­ing to

Zim­mer, the BBC con­ducted a sur­vey of of­fen­sive terms and found that in Bri­tain, spas­tic is the sec­ond-most of­fen­sive term for dis­abled peo­ple, af­ter re­tard, and as an in­sult over­all, it is “slightly less of­fen­sive than twat and piss off, and slightly more of­fen­sive than slag and shit.” Zim­mer links this ex­tra­or­di­nary sen­si­tiv­ity to Joey Dea­con, a man with cere­bral palsy, who, in 1981, the last year of his life, ap­peared on the chil­dren’s tele­vi­sion show Blue Peter and be­came much beloved. Other re­ports sug­gest that tele­vis­ing a man who spoke un­in­tel­li­gi­bly and spazzed out in his wheel­chair only gave new barbs to chil­dren the world over. If, for the Bri­tish, spaz and spas­tic re­main con­nected to the neu­ro­mus­cu­lar dis­abil­ity they de­scribe, in America, Zim­mer writes, spaz has “long lost any res­o­nance it might have had with the ep­i­thet spas­tic.” He cites sev­eral sources cred­ited with the di­ver­gence, in­clud­ing the Ox­ford English Dic­tio­nary, which cites an ex­cerpt from Pauline Kael’s 1965 book I Lost It at the Movies: “The term that Amer­i­can teen-agers now use as the op­po­site of ‘tough’ is ‘spaz.’ A spaz is a per­son who is cour­te­ous to teach­ers, plans for a ca­reer. . . and be­lieves in of­fi­cial val­ues. A spaz is some­thing like what adults still call a square.” But ac­cord­ing to a 1958 Cal­tech grad­u­ate who recorded the term in 1956, it also meant the op­po­site of square: “A per­son lack­ing in the com­mon so­cial skills & virtues. See TWITCH.” By 1978, spaz had been rein­car­nated on Satur­day Night Live as Chaz the Spaz (played by Steve Martin) in a sketch called “The Nerds,” and the fol­low­ing year, there was Meat­balls, fea­tur­ing a char­ac­ter named Spaz. But is spaz re­ally so di­vorced from its ori­gins in America? What this says to me is that we have taken the dis­com­fort­ing idea of brain dam­age and a body’s un­con­trol­lable limbs and drawn it out to its log­i­cal con­clu­sion—more palat­able thus anes­thetized—to mean an in­com­pe­tent or un­co­or­di­nated or un­cool per­son. Af­ter all, it is only in the last four decades that peo­ple with dis­abil­i­ties gained equal rights un­der the law. A few months ago, my hus­band and friends and I were at a stand-up show on Sun­set Boule­vard, and one of the head­lin­ers, an older gent, did a very funny rou­tine about his mem­ber­ship with Al­co­holics Anony­mous of Bev­erly Hills. Then he segued with a joke: “Let me ask you,” he said, “why do kids with Down syn­drome al­ways have the same hair­cut?” The au­di­ence be­gan to snicker. “Do they all go to the same stylist who tells them, ‘Yes, a bowl cut re­ally is best?’” Big laughs. I don’t like to be lame (another eas­ily com­mutable way of say­ing square), but I found my­self chok­ing up. I was still smok­ing cig­a­rettes then, so I went out­side and sucked one down. All I could think about was my son’s class­mate, a beau­ti­ful, jovial two-year-old who has Down syn­drome, and the fact

that he too has a bowl cut, and how his dad would have re­acted had he been in the room. So per­haps we can’t take a joke when it ap­plies to us, or maybe it’s re­ally only funny—rather, fair—when it orig­i­nates with the per­son to whom it ap­plies. But I think I know what Lenny Bruce would say about that. I’m re­fer­ring to his fa­mous bit on the N-word, and how he said that if Pres­i­dent Kennedy would only go on tele­vi­sion and use it over and over, it would have no more power than thank-you and good night. (“Well, I was just try­ing to make a point, and that is that it’s the sup­pres­sion of the word that gives it the power, the vi­o­lence, the vi­cious­ness.”) I’ve al­ways loved that bit, and in its light, per­haps spaz has been re­claimed—per­haps even be­come, in a culty sort of way, beloved—in America. Un­like the N-word, re­tard has not at­tained for­bid­den sta­tus. Some peo­ple still find it ac­cept­able to ridicule the dis­abled in stand-up com­edy, I sup­pose be­cause there are no an­gry Down syn­drome au­di­ence mem­bers to de­ter it. To my mind, there isn’t much that is funny about peo­ple with a ge­netic disor­der whose hair­cuts look alike be­cause their faces look alike be­cause of their ge­netic disor­der; but then I’m a spe­cial­needs mother, and I can be­gin to see how spe­cial-needs par­ents look alike too, so rec­og­nized by our lack of hu­mor.

Among the many print ref­er­ences to spas­tic that Ox­ford lists, here are a few I find poignant:

1896 Pe­di­atrics II. 194 The stag­ger­ing, un­cer­tain gait of the spas­tic, of­ten with knees strik­ing or ac­tu­ally crossed, with knees flexed and heels raised, is well known. 1937 P. M. GI­RARD Home Treatm. Spas­tic Paral­y­sis i. 10 As a spas­tic child later learns to walk, a typ­i­cal “scis­sors gait” is fre­quently ob­served. 1937 E. R. CARLSON in P. M. Gi­rard Home Treat­ment Spas­tic Paral­y­sis p. xix, Through re­peated ex­er­cises . . . the spas­tic grad­u­ally ac­quires mus­cu­lar co­or­di­na­tion. 1977 Whi­taker’s Al­manack 26 ( advt.) Jonathan has been se­verely spas­tic since birth, and is un­able to walk un­sup­ported. He also has dif­fi­culty with speak­ing and writ­ing.

All of them can de­scribe my son. And here I ar­rive at a cen­tral dif­fi­culty, which is defin­ing his place as a per­son with a toe­hold in the world of spe­cial needs. I feel com­pelled to do this for my son’s sake as much as for you, the reader. My son, to

whom my hus­band and I af­fec­tion­ately re­fer as “the boy,” has cere­bral palsy, a term I am rarely pre­pared to ex­plain to some­one who doesn’t know what it means. You can say it’s a con­gen­i­tal disor­der, but this is some­what in­ac­cu­rate, be­cause in the boy’s case, the in­jury oc­curred long be­fore birth, when a blood clot formed in the pla­centa at twenty-six weeks and for a time caused hy­poxia to his brain. Con­gen­i­tal, as a word, sounds so much like syphilis. You can say it’s a neu­ro­log­i­cal im­pair­ment, which might trans­late as “re­tarded.” You can say that cere­bral refers to the cere­bel­lum, and palsy refers to move­ment, so you see, it is a prob­lem with move­ment orig­i­nat­ing in the brain. Specif­i­cally, cere­bral palsy is caused by dam­age to the parts of the brain that con­trol move­ment, or mo­tor func­tion. As a disor­der, it is non­pro­gres­sive, mean­ing the dam­age that oc­curred was a one-time deal; it will never go away, though some of the con­comi­tant im­pair­ments can be over­come. But it’s hard to cre­ate an ac­cu­rate pic­ture short of bring­ing him along, and even then, peo­ple see what they see. I of­ten de­scribe the boy in terms of who he is: smart, witty, bright, re­silient, charm­ing. He wears hip glasses, and he hap­pens to be a beau­ti­ful child, which is a step ahead in it­self. He is nearly three years old, and if looked at by that mea­sure, he is far from the typ­i­cal child his age: he is not yet walk­ing or talk­ing, though he crawls and uses Amer­i­can Sign Lan­guage. He may walk with crutches, or he may end up in a wheel­chair. I think talk­ing will be hard for him, but he will learn to do it, though he may be for some or many years hard to un­der­stand. Be­cause of his di­ag­no­sis, he is at risk for de­vel­op­ing con­trac­tures, sco­l­io­sis, car­dio­vas­cu­lar and pul­monary com­pli­ca­tions, and early-on­set os­teoarthri­tis. But even so, he is far from the worst CP you’ll ever see. I used to de­scribe him as “spe­cial-needs lite,” be­cause we are nowhere near the dif­fi­cult end of the spec­trum. He can, for in­stance, sit and hold up his head and use his hands and he is healthy and af­fec­tion­ate and fo­cused and not at all vi­o­lent. It is im­per­a­tive to say how lucky we are.

Ac­ci­dents of Na­ture is a young adult novel pub­lished in 2006 by Har­riet Mcbryde John­son, and its cover is raked with gar­ish words: spazzo, crip, freak, stigma, out­cast, walkie-talkie. Next to crip is power; be­low ghastly is ev­ery­one’s a win­ner. The book showed up in a search for “cere­bral palsy” in my li­brary’s on­line cat­a­log, which re­turned twenty-five re­sults, most of them books I am never in the mood to read— Han­dling the Young Child with Cere­bral Palsy at Home, fourth edi­tion, or Yoga for the Spe­cial Child, or The Brain That Changes It­self: Sto­ries of Per­sonal Tri­umph from the Fron­tiers of Brain Sci­ence— the last of which I ac­tu­ally bought, but have not opened.

I clicked on Ac­ci­dents of Na­ture be­cause I read this ex­cerpt de­scrib­ing it, and af­ter that, I went and got it off the shelf:

I’m in the mid­dle of a full-blown spaz at­tack, and I don’t care. I don’t care at all. At home I al­ways try to act nor­mal, and spaz at­tacks def­i­nitely aren’t nor­mal. Here, peo­ple un­der­stand.

The book takes place over ten days at a sum­mer camp for dis­abled teens in North Carolina. It is 1970, twenty years be­fore the Amer­i­cans with Dis­abil­i­ties Act and five years be­fore the Ed­u­ca­tion for All Hand­i­capped Chil­dren Act—a time when “crip­pled” peo­ple were mostly con­fined to sep­a­rate homes and schools. John­son’s ac­count is fic­tional; how­ever, the jacket copy states that the au­thor went to a “cross-dis­abil­ity sum­mer camp un­til age seventeen,” and for this rea­son and more, I see much of her in the fast-talk­ing girl who be­comes the nar­ra­tor’s cat­a­lyst and friend. The ex­cerpted pas­sage fol­lows a scene in which the campers are play­ing horse­shoes. Our nar­ra­tor, Jean, who has cere­bral palsy, watches as a “walkie-talkie, MR girl” named Margie aces the game (“walkie-talkie” be­cause that was the nick­name campers gave to peo­ple who could do just that, and “MR” is for “men­tally re­tarded,” which un­til re­cently was still a le­gal di­ag­no­sis un­der the Di­ag­nos­tic and Sta­tis­ti­cal Man­ual of Men­tal Disor­ders):

Margie takes her po­si­tion. On the floor be­side her feet there are four horse­shoes . . . . Clang. A ringer! Cheers rise up. I go spas­tic: all four limbs jerk wild and free, and from my mouth comes a wild, free squeal. . . . Then comes the third. Clang! We’re in a frenzy . . . . The fourth lands. Another per­fect toss. There are no horse­shoes left. I’m in the mid­dle of a full-blown spaz at­tack, and I don’t care. I don’t care at all. At home I al­ways try to act nor­mal, and spaz at­tacks def­i­nitely aren’t nor­mal. Here, peo­ple un­der­stand. They know a spaz at­tack sig­nals that I’m ex­cited. They’re ex­cited too, so they squeal with me; some even spaz on pur­pose, if you can call that spazz­ing, and fool around mak­ing CP joy-sounds. Sue cuts them a look to make them stop copy­ing me, but I like it.

I stay semis­pas­tic through lunch. Three times I choke on my food. I don’t even try to calm down un­til rest pe­riod.

I can­not tell you how of­ten I have thought back to this de­scrip­tion. It more or less en­cap­su­lates my son’s be­hav­ior, which no doc­tor or ther­a­pist has been able to ex­plain so suc­cinctly, and gets at the essence of why we read: there are very few peo­ple who can tell cer­tain sto­ries, and un­til the boy is old enough to de­scribe this feel­ing to me him­self, if he ever wants to do so, I sus­pect this is the clos­est I will get to un­der­stand­ing his ex­pe­ri­ence.

Back when the move­ments were just be­com­ing wor­ri­some, ig­no­rance kept us from con­nect­ing them in any real way to the boy’s brain, or even to his di­ag­no­sis. Be­cause they seemed to hap­pen mostly when he was sit­ting—in the car, in the high chair, in shop­ping carts—we thought per­haps he was not in a well-sup­ported po­si­tion and his pro­pri­o­cep­tion was off: once he slid out of align­ment, his body could not lo­cate it­self in space. This was a sub­ject of much de­bate among his ther­a­pists, and we bought and tried var­i­ous po­si­tion­ing cush­ions. But be­cause the move­ments could also sig­nal some new de­gen­er­a­tive de­vel­op­ment in the brain, his ther­a­pists urged us to seek an ex­pert’s opin­ion, so we made an ap­point­ment with the chief neu­rol­o­gist at a cere­bral palsy re­search cen­ter at a prom­i­nent area hos­pi­tal. The boy was di­ag­nosed with cere­bral palsy when he was eigh­teen months old. The most ev­i­dent type of CP he has is spas­tic diple­gia, which means that the spas­tic­ity or mus­cle stiff­ness is pri­mar­ily in his legs. But most peo­ple with CP are af­fected by a mix­ture of types, and, as the chief neu­rol­o­gist, or, as I call her, the ex­pert, ex­plained, the boy also has ex­trapyra­mi­dal or dysk­i­netic CP, which would ex­plain the writhing or dance­like move­ments of his ex­trem­i­ties and the dif­fi­culty he has with speech and bal­ance. The ex­pert sug­gested that we see another prom­i­nent neu­rol­o­gist who runs a pe­di­atric move­ment disor­ders clinic, and said we might also try be­hav­ioral ther­apy to help him learn how to con­trol the episodes. She had no word for what the episodes are called. A week or two later, we met with our reg­u­lar neu­rol­o­gist, mostly be­cause I wanted to see if he could get our in­sur­ance to pay for the ex­pert’s sug­ges­tions. Our neuro had just seen the ex­pert at a con­fer­ence on epilepsy and sup­pos­edly con­ferred about our case (a prospect that makes me un­end­ingly cu­ri­ous), but he said he dis­agreed with her, and per­sisted in call­ing the episodes “stereo­typ­ies.” But that’s not re­ally

the point. The point was his re­laxed ease, which he’s al­ways had, about the boy’s fu­ture—my boy, who was sit­ting in a lit­tle-kid chair, with his se­ri­ous face, hap­pily rip­ping ex­am­i­na­tion-ta­ble pa­per into care­ful lit­tle shreds and sprin­kling them on the floor. (He must have known what I was think­ing.) The neuro said I needn’t worry about the so-called “stereo­typ­ies,” which are not re­lated to CP at all, be­cause “when he gets older, around the time he starts first grade, he’ll re­al­ize that this be­hav­ior isn’t nor­mal and other kids are star­ing, and he’ll fig­ure out a way to con­trol it.” There are many things that are dis­turb­ing about this ad­vice, and Ac­ci­dents of Na­ture cap­tures them all. The nar­ra­tor’s story is more or less that of a “Crip” hid­ing in a “Norm’s” cloth­ing. Jean, who is seventeen and uses a wheel­chair, is ac­cus­tomed to be­ing the only dis­abled per­son in her small town and surely learned to con­trol her spaz at­tacks in a man­ner sim­i­lar to that pre­scribed by our neu­rol­o­gist. She is pro­vin­cial and South­ern-proper: nicely tan, with blonde hair and blue eyes that she is proud of. Her new friend and soon-to-be cat­a­lyst, Sara, also uses a wheel­chair, but her di­ag­no­sis goes un­named. Sara, the daugh­ter of two pro­fes­sors whom she says de­scend from the “landed class,” doesn’t bother to shave her legs, and that is only the edge of things. Her torso “col­lapses like an ac­cor­dion” and leaves her head hov­er­ing some­where above her knees. She wears long, baggy skirts and big glasses and braids her hair. Noth­ing about Sara fits in; in fact she spends most of the book flout­ing the sys­tem, up­set­ting the camp au­thor­i­ties, and ques­tion­ing ev­ery as­sump­tion she thinks they have about peo­ple with dis­abil­i­ties. Sara goes too far ev­ery time she opens her mouth, whereas Jean never goes far enough. One of their early con­ver­sa­tions goes like this, af­ter Jean, in her halt­ing CP pitch, asks Sara if she too goes to “nor-mal school”:

“Not yet. I’ve been in Crip school, but at the end of this past school year, my teacher told my mother she can’t teach me any­more, so I’m out. The pub­lic schools don’t take Crips, so I’m go­ing to a pri­vate school. An all-white pri­vate school, no less . . . . “This pri­vate school is tak­ing me be­cause my mother has a friend on the fac­ulty. . . . But Crip school is great be­cause we’re all crip­pled—it’s truly bizarre—and there’s only one Re­pub­li­can in the class!”

My par­ents voted for Nixon in the last elec­tion and for Gold­wa­ter be­fore that. But that’s none of her busi­ness. “Maybe you can give me some lessons on how to be a Crip in Norm school. I’ll have to start fig­ur­ing that out, I guess.”

Jean replies, “I don’t think of my-self as crip-pled. I’m like eve-ry-one else.” To which Sara says, “Aw, come on. You’re a Crip. Oth­er­wise you wouldn’t be in Crip Camp. Say it loud, ‘I’m crip­pled and proud!’” The state­ment starts Jean off on her sec­ond spaz at­tack of the day, and she can’t re­ply.

The truth is some­times hard to look at with­out its var­i­ous guises, its plas­tic cov­ers; that’s why most of us in­stinc­tively ei­ther stare at or look away from an ob­vi­ously dis­abled per­son. It is dif­fi­cult to merely see, and per­haps John­son lets her read­ers in too close for their own com­fort. It goes with­out say­ing, I sup­pose, that this kind of short­hand— crip, norm, spazzo, walkie-talkie, lan­guage that dis­re­gards the proper names we use to both pro­tect the sub­ject from in­sult and keep ev­ery­one else from some mea­sure of the truth—can be of­fen­sive to some peo­ple. I have no­ticed in a few small-minded re­views that other peo­ple have found Ac­ci­dents of Na­ture to be un­read­able. You can’t see the words crip, spazzo, and walkie-talkie with­out know­ing what they are. Look at the book’s very ti­tle. Hy­poxia to the brain, miss­ing or ex­tra or trun­cated bits of Dna—these things are not sup­posed to hap­pen in na­ture, but they do. Po­lit­i­cally or med­i­cally cor­rect terms, on the other hand, tend to dis­tance us from what they ac­tu­ally de­scribe. We say brain in­jured in­stead of brain dam­aged; we say in­volved to con­note the ex­tent of a dis­abil­ity, to stand in for de­tails like he can’t keep his tongue in his mouth; we re­ject dis­abil­ity for dif­fer­ently abled. We say non-am­bu­la­tory and non­ver­bal in­stead of he’s not yet walk­ing or talk­ing, and in the case of my son, to use these terms is to skirt re­al­ity. Am­bu­late means to move from place to place, so say­ing that the boy is non-am­bu­la­tory doesn’t tell you that while he can’t yet walk, he can crawl like the devil and use a walker with a lot of as­sis­tance. Non­ver­bal doesn’t say any­thing about sign lan­guage or pro­fi­ciency with a “talker” or com­mu­ni­ca­tion de­vice, and it could also mean “min­i­mal use of lan­guage,” so why would I em­ploy this term to de­scribe my son, who can say “go” and “yeah” and “mama” and “da”

with his voice and who has, with ASL, the com­par­a­tive vo­cab­u­lary of a four-year-old? Plumb­ing the depths of spaz at­tack, I look for med­i­cal terms to put in its place. It has been months since we saw the ex­pert, so I am sur­prised to learn that the boy’s new pos­si­ble di­ag­no­sis has been the clue all along. Dysk­i­netic cere­bral palsy, Wikipedia tells me, is di­vided into two sub­types: choreoa­thetoid and dys­tonic. Choreoa­thetotic CP is “char­ac­ter­ized by in­vol­un­tary move­ments most pre­dom­i­nantly found in the face and ex­trem­i­ties.” So should the move­ments be called dysk­i­ne­sias? Per­haps. But dysk­i­ne­sia, as a neu­ro­log­i­cal disor­der, is as­so­ci­ated more with Parkin­son’s than CP. Choreo leads to chorea, which is sim­ply clas­si­fied as one of a group of dysk­i­ne­sias, and is lent more com­monly to Hunt­ing­ton’s dis­ease. One quickly gets lost in the labyrinth of ter­mi­nol­ogy. What I like about Wikipedia’s def­i­ni­tion is the de­scrip­tion of the move­ments, which “ap­pear to flow from one mus­cle to the next” and which “oc­cur on their own, with­out con­scious ef­fort.” This rings true. Chorea makes me think of chore­o­graph, as it should, since it comes from the Greek khor­eia, “danc­ing in uni­son,” or khoros, “cho­rus.” I like this, on the one hand, be­cause it ac­tu­ally means what it says: the hands and legs are danc­ing more or less in cho­rus, as are the breath and mouth, which al­lows for a mea­sure of beauty where most peo­ple see none. On the other hand, as a word, chorea is pure puff; it ex­presses none of the discomfort, none of the aching, none of the facts. So per­haps I choose spaz at­tack be­cause nam­ing some­thing as it is re­leases some of its hold over you, the med­i­cal patina, and also makes it more pointed, more bright—it be­comes some­thing you can hold in your hand, some­thing that is, more or less, yours.

Part of why I am drawn to Ac­ci­dents of Na­ture is be­cause it’s about our worst-case sce­nario: here are two girls in wheel­chairs, girls who have full lives and are pretty far from mis­er­able. This comes home in the book’s epi­logue, which is a let­ter writ­ten by Sara J. Buchanan to Wil­lie, a boy who shows up through­out the book as Sara’s erst­while side­kick, a “hideous guy” who is un­ex­plainedly dis­fig­ured, whom Jean never man­ages to look in the face. I know I am not, as a reader, sup­posed to view fic­tion through the lens of an au­thor’s life, but I don’t think John­son in­tended us to ig­nore the nu­mer­ous par­al­lels here be­tween Sara’s and her own life: af­ter all, she called the book a his­tor­i­cal novel, and the facts of her biog­ra­phy are pub­lic knowl­edge. John­son, who passed away in 2008, was a lawyer and dis­abil­ity rights ad­vo­cate who suf­fered from a de­gen­er­a­tive neu-

ro­mus­cu­lar dis­ease, the de­tails of which, her sis­ter told the New York Times, John­son pre­ferred not to know. Some­time in the 1990s, John­son ap­peared on an NBC talk show protest­ing telethons, par­tic­u­larly Jerry Lewis’s. In the epi­logue, Sara too has be­come a lawyer, roam­ing “the Norm world al­most as if [she] be­long[s] in it,” ap­pear­ing on tele­vi­sion to protest telethons and Jerry Lewis—this skinny woman whose ribcage is planted on her lap, gladly nav­i­gat­ing cob­ble­stone streets from her wheel­chair, as John­son did. In 2003, John­son pub­lished an ar­ti­cle in the New York Times Mag­a­zine af­ter tak­ing on philoso­pher Peter Singer for his views on the moral­ity of eu­th­a­niz­ing “se­verely dis­abled in­fants.” The chron­i­cle of her in­ter­ac­tions with Singer is lengthy and touch­ing. At one point, she de­scribes ask­ing Singer to ar­range her trip to Prince­ton, in­clud­ing re­quest­ing that her meal for the din­ner to which she’s been in­vited be pureed. A few weeks af­ter I read that piece, I stum­bled across an in­ter­view with John­son on Ouch!, a Bri­tish dis­abil­ity blog, and learned that her fa­vorite food was oys­ters. John­son’s cen­tral ar­gu­ment in her dis­cus­sion with Singer is that peo­ple like her­self are not “worse off” and that, if her lack of abil­i­ties seem to the “Norm” world a pity or a shame or any of the var­i­ous things we say about peo­ple who can­not do all the things we do, she is still ca­pa­ble and de­serv­ing of life. Nowhere is this point made so vividly in Ac­ci­dents of Na­ture as at the end of Sara’s let­ter to Wil­lie:

You have your nerve, ask­ing about my love life . . . . Well, FYI, my love life is rich and var­ied. I love old city streets—there’s noth­ing like bump­ing over slate side­walks and brick streets in a rick­ety vin­tage E&J. I love soul food and my TV re­mote con­trol. Stuff like that . . . . I love “pure and chaste from afar,” just like the Sand Hills Com­mu­nity Youth Cho­rale al­ways said we should. And I love you, dear hideous com­rade of an­cient strug­gles. As I hope you’ve al­ways known.

It is hard to put a fin­ger on why ex­actly the epi­logue has such cu­mu­la­tive power, par­tic­u­larly as, the first time I read it, I missed it, and I sup­pose most read­ers will if they don’t look fur­ther into John­son’s life. Part of what makes the book bear­able is the fact that it is a novel, and there­fore al­lows the reader to sep­a­rate from it slightly—al­lows, any­way, for the pos­si­bil­ity of sus­pended dis­be­lief. But John­son pulls a late trick in the last pages, in which she seems to say, no, now that you’ve ac­cepted

my story, I’ll tell you that it was all true, and here’s how I’ve ended up: yes, alone, and yes, crip­pled, but also with a ca­reer and friends and as much long­ing as any of us might ac­cu­mu­late in a life—that it’s pos­si­ble to see the beauty first, be­fore you see the chaste­ness or the chair. My af­fec­tion for John­son stems from this viewpoint. Her writ­ing al­lows me to step in­side this world that the boy, my hus­band, and I now in­habit, a world to which only the boy will ever ac­tu­ally be­long. I want, as much as I am able, and as much as I know it will one day an­noy him, to be able to re­late.

Ev­ery night around twelve, the boy and I sit in the rock­ing chair. Some­times my hus­band and I ar­gue about this, be­cause he says I have need­lessly wo­ken our boy by chang­ing a di­a­per that might not need to be changed, but I have come to like the twenty ex­tra min­utes I get to hold him in my lap. He used to sleep through it un­til we started mak­ing him wear leg im­mo­bi­liz­ers to bed. They are soft and cast-like and run from the tops of his thighs to his an­kles, and they close with Vel­cro, with two ad­di­tional Vel­cro straps to keep them tight, so they make an aw­ful noise when you take them off, which you have to do in or­der to re­move a di­a­per. It took months, but he got used to them, as chil­dren can more or less get used to any­thing, and now he some­times asks to put them on. Af­ter the im­mo­bi­liz­ers, we in­tro­duced hard plas­tic orthotics, which we call his boots, that reach up his calf and keep his feet flexed at ninety de­grees. He has worn these since we had Bo­tox in­jected into his legs. Be­tween the im­mo­bi­liz­ers and the boots, he gets twelve hours of stretch­ing that we would never be able to in­cor­po­rate into his day, and it should make a big dif­fer­ence in the ef­fec­tive­ness of the Bo­tox—the idea be­ing that while the me­dial ham­strings and soleus (lower calf) mus­cles are dead­ened, we can stretch them past what they would nor­mally tol­er­ate, so that when the Bo­tox wears off, his mus­cles are a bit more length­ened. While we sit to­gether, I of­ten think of Emily Rapp, whose book, Still Point of the Turn­ing World, sits un­opened on my bed­side ta­ble. Emily Rapp who, along with her late son, Ro­nan, has be­come part of my daily con­scious­ness. Ro­nan was close to the boy’s age, not yet three, when he died from Tay-sachs, a hered­i­tary disor­der that is al­ways fa­tal; the later pho­tos of him on Emily’s blog still bring me to my knees. As par­ents, we want our chil­dren not to suf­fer, and this means one thing to the par­ent of a child with spe­cial needs and quite another to the par­ent of a dy­ing child. One de­tail that was acutely painful to me

about Emily’s ex­pe­ri­ence par­ent­ing Ro­nan was that he too un­der­went phys­i­cal ther­apy. On her blog, Our Lit­tle Seal, she wrote about Ro­nan’s ther­a­pist’s weekly notes, which listed what they had done each day; in one note, the ther­a­pist men­tions help­ing Ro­nan lo­cate his body in space. Pro­pri­o­cep­tion. The boy and I ex­pend so much en­ergy try­ing to best his di­ag­no­sis, but Ro­nan’s was un­re­lent­ing, and any progress against it could only be pal­lia­tive, and too short. There is a claw­ing des­per­a­tion to Emily’s early writ­ing that I rec­og­nize in other spe­cial-needs moth­ers I know, moth­ers with whom I imag­ine Emily would have gladly traded places. I think of Robert Hass: “Long­ing, we say, be­cause de­sire is full / of end­less dis­tances.” It took me a long time to read Emily’s blog when it first came to light, so I pro­cras­ti­nated by check­ing her mem­oir out of the li­brary, a dis­abil­ity mem­oir, as it turns out, about grow­ing up with a pros­thetic leg; she was born with a ge­netic de­fect that they treated then with grad­ual am­pu­ta­tion and pros­the­ses. The scenes I re­mem­ber most vividly from the book are of Emily as a child, ly­ing awake at night in a full-body cast each time she had a new am­pu­ta­tion to re­move a lit­tle bit more of her left leg—nights con­tain­ing an un­told num­ber of pri­vate mis­eries.

Along with the night­time brac­ing, the boy at­tends hours of phys­i­cal, oc­cu­pa­tional, speech, and feed­ing ther­apy each week, bol­stered by more of this work at home. He has, since the age of nine months, not known any other kind of life. There is a scene that touches on this in Ac­ci­dents of Na­ture, in which the two girls dis­cuss their early years of phys­i­cal ther­apy. Sara was able to crawl as a child but never had the strength to stand; she seems to have al­ways known that she would live in a wheel­chair. She tells Jean about her phys­i­cal ther­a­pist, a Ger­man woman her mother called the Bitch of Buchen­wald, and that she was re­lieved when the de­ci­sion was made to let life have its way with her legs. Jean, who at seven was able to walk us­ing a gait trainer and leg braces, is shaken by Sara’s story, and thinks, “Can a wheel­chair be a choice, and not a fail­ure?” In a later scene, when the friends are mak­ing fun of the song “You’ll Never Walk Alone,” she won­ders if “walk­ing is some­thing you can mock. Not walk­ing as an or­di­nary means of get­ting around, but Walk­ing as a big dra­matic idea.” When the boy’s phys­i­cal ther­a­pist sold the idea of the night brac­ing to me, I knew that in essence she was say­ing it was ei­ther this or a wheel­chair. There have been many stud­ies about the in­ef­fec­tive­ness of Bo­tox with­out con­cur­rent and pro­longed stretch­ing; once we de­cided to do the Bo­tox, there wasn’t re­ally any choice about the rest of it. Some­times I

give the boy a night off, and he goes back to sleep­ing the way he likes, in that tummy crouch he never em­braced as an in­fant, with his butt in the air. I know he would sleep a lot bet­ter with­out the brac­ing, and sleep is al­ready a chal­lenge, but I also know that this is one of the things we have to en­dure—it is specif­i­cally one of the things he will have to en­dure, likely un­til he is fin­ished grow­ing. I don’t want to fail him, but I also don’t want him to re­mem­ber a child­hood of be­ing pushed too hard. I have to de­cide for him now, be­tween wheel­chair and walk­ing. Later, I tell my­self, he can make the choice. But some­where in here, you won­der: How much is too much? Are thirty hours a week of early-in­ter­ven­tion school and ther­a­pies and drive time to and from too much? Is phys­i­cal ther­apy four af­ter­noons a week too much? Is the night­time tor­ture too much? All this, for a child who has many years of brain plas­tic­ity ahead of him? Tonight, as I put the im­mo­bi­liz­ers back on, he be­gins to wake up, and then he starts to cry, and I wince, know­ing my hus­band will hear from the next room. I will sit with you in the rock­ing chair un­til you fall asleep, I say. The same chair in which my par­ents rocked my sib­lings and me. He’s tall now, and with im­mov­able parts, he can no longer rest his head on my shoul­der the way he wants to. He’s too big and stiff, so I have to sit him side­ways, his new gi­ant body, his legs like boards across my lap. He leans against me and I tell him, you are three feet tall and you are al­most three years old, and when you were born, did you know, you weighed three pounds and fif­teen ounces? There is magic in trip­li­cates, and there is magic in him. Yeah, he says, in his round lit­tle voice. He says yeah to ev­ery­thing. He drinks some wa­ter, and I lis­ten to it go down his throat to­ward his belly; when he’s fin­ished, he gives me the cup and lifts his arms and waits. I pick him up and stand, leav­ing the com­fort of the chair so I can hug him, and he tucks his arms be­neath mine. The hard plas­tic toes of his boots knock against my legs. We stay like that for a while.

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