There's an ancient parable about a farmer who lost his horse. And neighbors came over to say, "Oh, that's too bad." And the farmer said, "Good or bad, hard to say." Days later, the horse returns and brings with it seven wild horses. And neighbors come over to say, "Oh, that's so good!" And the farmer just shrugs and says, "Good or bad, hard to say." The next day, the farmer's son rides one of the wild horses, is thrown off and breaks his leg. And the neighbors say, "Oh, that's terrible luck." And the farmer says, "Good or bad, hard to say." Eventually, officers come knocking on people's doors, looking for men to draft for an army, and they see the farmer's son and his leg and they pass him by. And neighbors say, "Ooh, that's great luck!" And the farmer says, "Good or bad, hard to say."
Postoji stara parabola o seljaku koji je izgubio konja. Komšije su došle da kažu: „O, baš loše.“ A seljak je rekao: „Dobro ili loše, teško je reći.“ Danima kasnije, konj se vratio i sa sobom doveo sedam divljih konja. Komšije su došle da kažu: „O, to je baš dobro!“ A seljak samo slegne ramenima i kaže: „Dobro ili loše, teško je reći.“ Sledećeg dana, sin seljaka ode da jaše jednog divljeg konja, bude zbačen sa sedla i polomi nogu. Komšije kažu: „O, baš loša sreća.“ A seljak kaže: „Dobro ili loše, teško je reći.“ Na kraju dođu oficiri da kucaju ljudima na vrata, tražeći muškarce da ih regrutuju za vojsku, vide seljakovog sina i njegovu nogu i zaobiđu ga. Komšije kažu: „O, baš velika sreća!“ A seljak kaže: „Dobro ili loše, teško je reći.“
I first heard this story 20 years ago, and I have since applied it 100 times. Didn't get the job I wanted: good or bad, hard to say. Got the job I wanted: good or bad, hard to say. To me, the story is not about looking on the bright side or waiting to see how things turn out. It's about how eager we can be to label a situation, to put concrete around it by judging it. But reality is much more fluid, and good and bad are often incomplete stories that we tell ourselves. The parable has been my warning that by gripping tightly to the story of good or bad, I close down my ability to truly see a situation. I learn more when I proceed and loosen my grip and proceed openly with curiosity and wonder.
Prvi put sam čula tu priču pre 20 godina i od tada sam je primenila 100 puta. Nisam dobila posao koji sam htela: dobro ili loše, teško je reći. Dobila sam posao koji sam htela; dobro ili loše, teško je reći. Za mene, u ovoj priči se ne radi o gledanju sa vedrije strane niti čekanju da bi se videlo kako će nešto ispasti. Radi se o tome koliko možemo imati potrebu da prilepimo etiketu situaciji, da je zatvorimo u čvrste okvire prosuđujući o njoj. Ali stvarnost je mnogo promenljivija, a dobro i loše su često nepotpune priče koje pričamo samima sebi. Ova parabola je bila moje upozorenje na to da, čvrsto se držeći priče o dobrom i lošem, gušim svoju sposobnost da istinski sagledam situaciju. Više naučim kada krenem, popustim stisak i otvoreno nastavim uz radoznalost i čuđenje.
But seven years ago, when I was pregnant with my first child, I completely forgot this lesson. I believed I knew wholeheartedly what was good. When it came to having kids, I thought that good was some version of a superbaby, some ultrahealthy human who possessed not a single flaw and would practically wear a cape flying into her superhero future. I took DHA pills to ensure that my baby had a super-high-functioning, supersmart brain, and I ate mostly organic food, and I trained for a medication-free labor, and I did many other things because I thought these things would help me make not just a good baby, but the best baby possible.
Ali pre sedam godina, kada sam bila trudna sa svojim prvim detetom, sasvim sam zaboravila ovu lekciju. Iskreno sam verovala da znam šta je dobro. Kada se radilo o rađanju dece, mislila sam da je dobro neka verzija superbebe, nekog ultrazdravog ljudskog bića koje nema ni jednu jedinu manu i koje bi praktično nosilo plašt koji bi ga odneo u budućnost superheroja. Uzimala sam pilule sa DHK da bih se osigurala da moja beba ima mozak koji super funkcioniše, koji je izuzetno pametan, jela sam uglavnom organsku hranu, vežbala sam za porođaj bez lekova i radila sam mnogo drugih stvari jer sam mislila da će mi pomoći ne samo da stvorim dobru bebu, već najbolju moguću bebu.
When my daughter Fiona was born, she weighed 4 pounds, 12 ounces, or 2.15 kilograms. The pediatrician said there were only two possible explanations for her tiny size. "Either," he said, "it's bad seed," "or it's bad soil." And I wasn't so tired from labor to lose the thread of his logic: my newborn, according to the doctor, was a bad plant. Eventually, I learned that my daughter had an ultra-rare chromosomal condition called Wolf-Hirschhorn syndrome. She was missing a chunk of her fourth chromosome. And although my daughter was good -- she was alive, and she had brand new baby skin and the most aware onyx eyes -- I also learned that people with her syndrome have significant developmental delays and disabilities. Some never learn to walk or talk.
Kada se moja ćerka Fiona rodila, imala je četiri funte i 12 unci ili 2,15 kilograma. Pedijatar je rekao da postoje samo dva moguća objašnjenja za to što je tako malena. „Ili je loše seme“, rekao je, „ili je loše zemljište.“ Nisam bila toliko umorna od porođaja da bih izgubila nit njegove logike: moje novorođenče je, prema doktoru, bilo loša biljka. Na kraju sam saznala da moja ćerka ima izuzetno retko stanje hromozoma zvano Volf-Hiršhornov sindrom. Nedostajao joj je deo četvrtog hromozoma. I mada je moja ćerka bila dobro - bila je živa, imala je novu bebastu kožu i vrlo svesne oči poput oniksa - takođe sam saznala da ljudi sa njenim sindromom značajno zaostaju u razvoju i imaju invaliditete. Neki nikada ne nauče da hodaju ili govore.
I did not have the equanimity of the farmer. The situation looked unequivocally bad to me. But here's where the parable is so useful, because for weeks after her diagnosis, I felt gripped by despair, locked in the story that all of this was tragic. Reality, though -- thankfully -- is much more fluid, and it has much more to teach. As I started to get to know this mysterious person who was my kid, my fixed, tight story of tragedy loosened. It turned out my girl loved reggae, and she would smirk when my husband would bounce her tiny body up and down to the rhythm. Her onyx eyes eventually turned the most stunning Lake Tahoe blue, and she loved using them to gaze intently into other people's eyes. At five months old, she could not hold her head up like other babies, but she could hold this deep, intent eye contact. One friend said, "She's the most aware baby I've ever seen."
Nisam imala staloženost seljaka. Situacija mi je izgledala nedvosmisleno loše. Ali, evo gde je parabola korisna, jer sam nedeljama nakon dijagnoze bila obuzeta očajem, zaglavljena u priči u kojoj je sve bilo tragično. Stvarnost je, doduše - srećom - mnogo promenljivija i ima mnogo čemu još da nauči. Kada sam počela da upoznajem tu misterioznu osobu od mog deteta, popustila je moja fiksirana, kruta priča o tragediji. Ispostavilo se da moja devojčica voli rege i kezila se kada bi moj muž bacakao njeno sićušno telo gore-dole u ritmu. Njene oči noje oniksa su na kraju poprimile najdivniju plavu boju poput jezera Taho, i volela je da njima intenzivno zuri drugim ljudima u oči. Na uzrastu od pet meseci, nije umela da drži glavu uspravno kao druge bebe, ali mogla je da održava dubok, intenzivan kontakt očima. Jedan prijatelj mi je rekao: „Ona je najsvesnija beba koju sam ikad video.“
But where I saw the gift of her calm, attentive presence, an occupational therapist who came over to our house to work with Fiona saw a child who was neurologically dull. This therapist was especially disappointed that Fiona wasn't rolling over yet, and so she told me we needed to wake her neurology up. One day she leaned over my daughter's body, took her tiny shoulders, jostled her and said, "Wake up! Wake up!" We had a few therapists visit our house that first year, and they usually focused on what they thought was bad about my kid. I was really happy when Fiona started using her right hand to bully a dangling stuffed sheep, but the therapist was fixated on my child's left hand. Fiona had a tendency not to use this hand very often, and she would cross the fingers on that hand. So the therapist said we should devise a splint, which would rob my kid of the ability to actually use those fingers, but it would at least force them into some position that looked normal.
Ali tu gde sam ja videla dar njenog mirnog, pažljivog prisustva, okupaciona terapeutkinja koja je došla da radi u našoj kući sa Fionom videla je dete koje je bilo neurološki tupo. Ova terapeutkinja je naročito bila razočarana jer se Fiona još nije prevrtala, pa mi je rekla da moramo da probudimo njenu neurologiju. Jednog dana se nagnula nad mojom ćerkom, uhvatila je za njena mala ramena, prodrmala je i rekla: „Probudi se! Probudi se!“ Nekoliko terapeuta je posećivalo našu kuću te prve godine i obično su se fokusirali na ono što su mislili da je loše kod mog deteta. Bila sam baš srećna kada je Fiona počela da koristi desnu ruku da udara viseću plišanu ovcu, ali se terapeut fiksirao na njenu levu ruku. Fiona je imala tendenciju da ne koristi tu ruku često, i prekrstila bi prste na toj ruci. Zato je terapeut rekao da treba da osmislimo neki uložak koji bi mom detetu oduzeo sposobnost da zapravo koristi te prste, ali bi ih makar naterao da zauzmu neki položaj koji izgleda normalno.
In that first year, I was starting to realize a few things. One: ancient parables aside, my kid had some bad therapists.
Te prve godine počela sam da shvatam nekoliko stvari. Prvo: stare parabole na stranu, moje dete je imalo loše terapeute.
(Laughter)
(Smeh)
Two: I had a choice. Like a person offered to swallow a red pill or a blue pill, I could choose to see my daughter's differences as bad; I could strive toward the goal that her therapists called, "You'd never know." They loved to pat themselves on the back when they could say about a kid, "You'd never know he was 'delayed' or 'autistic' or 'different.'" I could believe that the good path was the path that erased as many differences as possible. Of course, this would have been a disastrous pursuit, because at the cellular level, my daughter had rare blueprints. She wasn't designed to be like other people. She would lead a rare life. So, I had another choice: I could drop my story that neurological differences and developmental delays and disabilities were bad, which means I could also drop my story that a more able-bodied life was better. I could release my cultural biases about what made a life good or bad and simply watch my daughter's life as it unfolded with openness and curiosity.
Drugo: imala sam izbor. Kao osoba kojoj je ponuđeno da proguta crvenu ili plavu pilulu, mogla sam da odaberem da vidim različitosti svoje ćerke kao loše; mogla sam da težim cilju koji su njeni terapeuti zvali „ko bi rekao“. Voleli su da čestitaju sebi kada bi mogli da kažu za dete: „Ko bi rekao da je 'usporeno', 'autistično' ili 'drugačije'.“ Mogla sam da verujem da je dobra staza ona koja briše što je moguće više razlika. Naravno, to bi bila katastrofalna putanja, jer je, na ćelijskom nivou, moja ćerka imala redak nacrt. Nije bila programirana da bude kao drugi ljudi. Vodila bi neobičan život. Imala sam zato drugi izbor. Mogla sam da odustanem od svoje priče da su neurološke razlike, kašnjenje u razvoju i invaliditeti loši, što znači da bih takođe napustila priču da je život u sposobnijem telu bolji. Mogla sam da odustanem od svojih kulturnih predrasuda o tome šta život čini dobrim ili lošim i jednostavno posmatram dok se život moje ćerke odvija uz otvorenost i radoznalost.
One afternoon she was lying on her back, and she arched her back on the carpet stuck her tongue out of the side of her mouth and managed to torque her body onto her belly. Then she tipped over and rolled back onto her back, and once there, she managed to do it all over again, rolling and wiggling her 12-pound self under a coffee table. At first, I thought she'd gotten stuck there, but then I saw her reaching for something that her eye had been on all along: a black electric cord. She was a year old. Other babies her age were for sure pulling up to stand and toddling around, some of them. To some, my kid's situation looked bad: a one-year-old who could only roll. But screw that. My kid was enjoying the new, limber freedom of mobility. I rejoiced. Then again, what I watched that afternoon was a baby yanking on an electric cord, so you know, good or bad, hard to say.
Jednog popodneva je ležala na leđima i povila je leđa na tepihu, izbacila jezik na stranu usta i uspela da izvije telo na stomak. Zatim se preturila i prevrnula se na leđa i još jednom je uspela da sve to ponovi, prevrćući i koprcajući se ispod stočića sa svojih 5,5 kila. Najpre sam pomislila da se zaglavila tu, ali zatim sam videla kako poseže za nečim u šta je sve vreme gledala: za crnim električnim kablom. Imala je godinu dana. Svakako da su se druge bebe njenog uzrasta uspravljale da stoje i gegale unaokolo, neke od njih. Za neke je situacija sa mojim detetom izgledala loše - jednogodišnjakinja koja može samo da se prevrće. Ali koga briga za to. Moje dete je uživalo u novoj, gipkoj slobodi pokretljivosti. Radovala sam se. Pa ipak, tog popodneva sam posmatrala kako beba vuče električni kabl, tako da, znate, dobro ili loše, teško je reći.
(Laughter)
(Smeh)
I started seeing that when I released my grip about what made a life good or bad, I could watch my daughter's life unfold and see what it was. It was beautiful, it was complicated, joyful, hard -- in other words: just another expression of the human experience.
Počela sam da uviđam da, kada sam prestala da se grčevito držim za ono što život čini dobrim ili lošim, mogla sam da posmatram život svoje ćerke kako se odvija i da vidim kakav on jeste. Bio je prelep, bio je složen, radostan, težak. Drugim rečima, samo još jedan izraz ljudskog iskustva.
Eventually, my family and I moved to a new state in America, and we got lucky with a brand-new batch of therapists. They didn't focus on all that was wrong with my kid. They didn't see her differences as problems to fix. They acknowledged her limitations, but they also saw her strengths, and they celebrated her for who she was. Their goal wasn't to make Fiona as normal as possible; their goal was simply to help her be as independent as possible so that she could fulfill her potential, however that looked for her.
Na kraju smo se moja porodica i ja preselili u novu američku državu i posrećilo nam se sa novom grupom terapeuta. Oni se nisu fokusirali na sve ono što ne valja kod mog deteta. Nisu videli njene razlike kao probleme koje treba popraviti. Prepoznali su njena ograničenja, ali su takođe videli njene snage i veličali su je zbog onoga što jeste. Njihov cilj nije bio da što više unormale Fionu; cilj im je bio da joj jednostavno pomognu da bude što je moguće više nezavisna tako da ostvari svoj potencijal, kako god to kod nje izgledalo.
But the culture at large does not take this open attitude about disabilities. We call congenital differences "birth defects," as though human beings were objects on a factory line. We might offer pitying expressions when we learn that a colleague had a baby with Down syndrome. We hail a blockbuster film about a suicidal wheelchair user, despite the fact that actual wheelchair users tell us that stereotype is unfair and damaging. And sometimes our medical institutions decide what lives are not worth living. Such is the case with Amelia Rivera, a girl with my daughter's same syndrome. In 2012, a famous American children's hospital initially denied Amelia the right to a lifesaving kidney transplant because, according to their form, as it said, she was "mentally retarded." This is the way that the story of disabilities as bad manifests in a culture.
Ali, uopšte gledano, kultura ne zauzima ovaj otvoreni stav o invalidnosti. Nazivamo kongenitalne razlike „urođenim manama“, kao da su ljudska bića predmeti na fabričkoj traci. Možda ćemo izraziti saosećanje kada saznamo da je koleginica dobila bebu sa Daunovim sindromom. Hvalimo popularni film o suicidnom korisniku invalidskih kolica, uprkos činjenici da nam ljudi koji zaista koriste invalidska kolica poručuju da je ovaj stereotip nepravedan i štetan. Ponekad naše medicinske ustanove odlučuju koje živote ne vredi živeti. Takav je slučaj sa Amelijom Riverom, devojčicom sa istim sindromom koji ima moja ćerka. Godine 2012, poznata američka bolnica za decu prvobitno je Ameliji uskratila pravo na spasonosnu transplantaciju bubrega jer je ona, prema njihovom obrascu, kako je navedeno, „mentalno retardirana“. Na ovaj način se priča o invalidnostima kao o lošim manifestuje u kulturi.
But there's a surprisingly insidious counterstory -- the story, especially, that people with intellectual disabilities are good because they are here to teach us something magical, or they are inherently angelic and always sweet. You have heard this ableist trope before: the boy with Down syndrome who's one of God's special children, or the girl with the walker and the communication device who is a precious little angel. This story rears its head in my daughter's life around Christmastime, when certain people get positively giddy at the thought of seeing her in angel's wings and a halo at the pageant. The insinuation is that these people don't experience the sticky complexities of being human. And although at times, especially as a baby, my daughter has, in fact, looked angelic, she has grown into the type of kid who does the rascally things that any other kid does, such as when she, at age four, shoved her two-year-old sister. My girl deserves the right to annoy the hell out of you, like any other kid.
Ali, postoji iznenađujući prikriveni kontrast - priča o tome kako su, pogotovo, ljudi sa intelektualnom ometenošću dobri jer su ovde da bi nas naučili nečemu čarobnom ili da su sami po sebi anđeli i uvek ljupki. Čuli ste već ovaj disabilistički trop: dečak sa Daunovim sindromom koji je jedno od božje posebne dece ili devojčica sa šetalicom i komunikacionim uređajem koja je dragoceni mali anđeo. Ova priča je pomolila glavu u životu moje ćerke u vreme Božića, kada izvesne ljude uhvati pozitivno raspoloženje na pomisao da je vide sa krilima anđela i oreolom na maskenbalu. Stiče se utisak da ovi ljudi ne proživljavaju nezgodne složenosti ljudskog postojanja. Iako je povremeno, pogotovo kao beba, moja ćerka zaista izgledala kao anđeo, izrasla je u takvo dete koje radi nevaljale stvari kao i bilo koje dete, kao kada je, sa četiri godine, gurnula svoju dvogodišnju sestru. Moja devojčica zaslužuje pravo da vas nervira do bola, kao i svako drugo dete.
When we label a person tragic or angelic, bad or good, we rob them of their humanity, along with not only the messiness and complexity that that title brings, but the rights and dignities as well. My girl does not exist to teach me things or any of us things, but she has indeed taught me: number one, how many mozzarella cheese sticks a 22-pound human being can consume in one day -- which is five, for the record; and two, the gift of questioning my culture's beliefs about what makes a life good and what makes life bad.
Kada etiketiramo osobu kao tragičnu ili anđeosku, lošu ili dobru, oduzimamo joj ljudskost, a uz to ne samo i haotičnost i složenost koju ta titula nosi, već i prava i dostojanstvo. Moja devojčica ne postoji da bi mene ili bilo koga drugog podučila nečemu, ali me je zaista naučila: kao prvo, koliko štapića od mocarele ljudsko biće od 10 kilograma može da pojede u jednom danu - pet, da se zna; i kao drugo, daru preispitivanja mojih kulturoloških uverenja o tome šta život čini dobrim, a šta ga čini lošim.
If you had told me six years ago that my daughter would sometimes use and iPad app to communicate, I might have thought that was sad. But now I recall the first day I handed Fiona her iPad, loaded with a thousand words, each represented by a tiny little icon or little square on her iPad app. And I recall how bold and hopeful it felt, even as some of her therapists said that my expectations were way too high, that she would never be able to hit those tiny targets. And I recall watching in awe as she gradually learned to flex her little thumb and hit the buttons to say words she loved, like "reggae" and "cheese" and a hundred other words she loved that her mouth couldn't yet say. And then we had to teach her less-fun words, prepositions -- words like "of" and "on" and "in." And we worked on this for a few weeks. And then I recall sitting at a dining room table with many relatives, and, apropos of absolutely nothing, Fiona used her iPad app to say, "poop in toilet."
Da ste mi rekli pre šest godina da će moja ćerka ponekad koristiti aplikaciju na Ajpedu da komunicira, možda bih pomislila da je to tužno. Ali sada se sećam prvog dana kada sam Fioni dala njen Ajped, pun hiljadu reči, od kojih je svaka predstavljena ikonicom ili kvadratićem na njenoj aplikaciji. Sećam se kakav je to bio osećaj odvažnosti i nade, iako su neki njeni terapeuti govorili da su moja očekivanja previsoka, da ona nikada neće moći da pogodi te sićušne mete. Sećam se kako sam je posmatrala sa oduševljenjem dok je postepeno učila da savije svoj maleni palac i pritisne dugmad da bi rekla reči koje voli, kao što su „rege“, „sir“ i stotinu drugih reči koje voli, a koje njena usta još ne mogu da izgovore. Zatim smo morali da je naučimo manje zabavnim rečima, predlozima, rečima kao što su „od“, „na“ i „u“. Radili smo na tome nekoliko nedelja. Zatim, sećam se da smo sedeli za trpezarijskim stolom sa mnogo rođaka, i onako sasvim uzgred, Fiona je upotrebila aplikaciju na Ajpedu da kaže: „kaka u šolji“.
(Laughter)
(Smeh)
Good or bad, hard to say.
Dobro ili loše, teško je reći.
(Laughter)
(Smeh)
My kid is human, that's all. And that is a lot.
Moje dete je ljudsko biće, to je sve. A to je velika stvar.
Thank you.
Hvala.
(Applause)
(Aplauz)