"Inclús en termes no religiosos, la homosexualitat representa un mal ús de la facultat sexual. És un substitut patètic de segona categoria a la realitat... un vol deplorable de la vida. Com a tal, no es mereix cap compassió, i tampoc cap tractament com a martiri d'una minoria, i no es mereix res més que ser considerada com una malaltia perniciosa".
"Even in purely nonreligious terms, homosexuality represents a misuse of the sexual faculty. It is a pathetic little second-rate substitute for reality -- a pitiable flight from life. As such, it deserves no compassion, it deserves no treatment as minority martyrdom, and it deserves not to be deemed anything but a pernicious sickness."
Això és de la revista Time de 1966, quan tenia tres anys. I l'any passat, el president dels Estats Units es va posicionar a favor del matrimoni gai.
That's from "Time" magazine in 1966, when I was three years old. And last year, the president of the United States came out in favor of gay marriage.
(Aplaudiments)
(Applause)
I la meva pregunta és, com hem anat d'allà fins aquí? Com una malaltia s'ha convertit en una identitat?
And my question is: How did we get from there to here? How did an illness become an identity?
Quan potser tenia sis anys, Vaig anar a una botiga de sabates amb la meva mare i el meu germà. Quan finalment anàvem a comprar les nostres sabates, el botiguer ens va dir que cadascun es podia emportar un globus a casa. El meu germà volia un globus vermell i jo volia un globus rosa. La meva mare va dir que ella pensava que realment havia de tenir un globus blau. Però jo vaig dir que volia definitivament el rosa. I ella em va recordar que el meu color preferit era el blau. El fet que ara el meu color preferit sigui el blau, però que encara sigui gai... (Riure) és una evidència tant de la influència de la meva mare com dels seus límits.
When I was perhaps six years old, I went to a shoe store with my mother and my brother. And at the end of buying our shoes, the salesman said to us that we could each have a balloon to take home. My brother wanted a red balloon, and I wanted a pink balloon. My mother said that she thought I'd really rather have a blue balloon. (Laughter) But I said that I definitely wanted the pink one. And she reminded me that my favorite color was blue. The fact that my favorite color now is blue, but I'm still gay -- (Laughter) is evidence of both my mother's influence and its limits.
(Riure)
(Laughter)
(Aplaudiments)
(Applause)
Quan era petit, la meva mare acostumava a dir, "L'amor que tens pels teus fills no es pot comparar amb cap altre sentiment al món. I fins que no tinguis fills, no sabràs com és". I quan era petit, vaig considerar com el més gran compliment en el món que digués això sobre la criança del meu germà i de mi. I quan era adolescent, pensava que sóc gai, així que probablement no puc tenir una família. I quan ella ho va dir, em vaig posar molt ansiós. I després que sortís de l'armari, quan ella ho va continuar dient, em va posar furiós. I jo vaig dir, "Sóc gai. Aquesta no és la direcció per on vaig. I vull que paris de dir-ho".
When I was little, my mother used to say, "The love you have for your children is like no other feeling in the world. And until you have children, you don't know what it's like." And when I was little, I took it as the greatest compliment in the world that she would say that about parenting my brother and me. And when I was an adolescent, I thought, "But I'm gay, and so I probably can't have a family." And when she said it, it made me anxious. And after I came out of the closet, when she continued to say it, it made me furious. I said, "I'm gay. That's not the direction that I'm headed in. And I want you to stop saying that."
Uns 20 anys enrere, els editors de la revista New York Times em van preguntar si podia escriure un article sobre la cultura sorda. I em vaig quedar una mica de pedra. Havia considerat la sordesa completament com una malaltia. Aquelles pobres persones, no podien sentir. No podien escoltar, i què es podia fer per ells? I doncs vaig entrar en la cultura sorda. I vaig anar a clubs de sords. I vaig veure actuacions de teatre sord i de poesia sorda. I fins i tot vaig anar a la competició "Miss Amèrica Sorda" a Nashville, Tennessee, on persones van queixar-se d'aquell espès cant del Sud.
About 20 years ago, I was asked by my editors at the "New York Times Magazine" to write a piece about Deaf culture. And I was rather taken aback. I had thought of deafness entirely as an illness: those poor people, they couldn't hear, they lacked hearing, and what could we do for them? And then I went out into the Deaf world. I went to Deaf clubs. I saw performances of Deaf theater and of Deaf poetry. I even went to the Miss Deaf America contest in Nashville, Tennessee, where people complained about that slurry Southern signing.
(Riure)
(Laughter)
I a mesura que més m'endinsava en el món dels sords, em vaig convèncer que la sordesa era una cultura i que les persones en el món dels sords que deien "No ens falta escoltar, formem part d'una cultura" estaven dient una cosa viable. No era la meva cultura, i no volia particularment córrer per unir-m'hi, però vaig adonar-me que era una cultura i que per a les persones que n'eren membres, era tan valuosa com la cultura llatina o la cultura gai o la cultura jueva. La consideraven tan vàlida com potser la cultura americana.
And as I plunged deeper and deeper into the Deaf world, I became convinced that Deafness was a culture and that the people in the Deaf world who said, "We don't lack hearing; we have membership in a culture," were saying something that was viable. It wasn't my culture, and I didn't particularly want to rush off and join it, but I appreciated that it was a culture and that for the people who were members of it, it felt as valuable as Latino culture or gay culture or Jewish culture. It felt as valid, perhaps, even as American culture.
Després un amic d'un amic meu tenia una germana afectada pel nanisme. I quan la seva filla va néixer, de cop i volta es va veure confrontada a preguntes que en aquell moment em van començar a semblar una mica ressonants. Estava encarant la pregunta de què fer amb la seva filla. Havia de dir, "Ets com qualsevol altre però una mica més baixa?". O havia d'intentar construir algún tipus d'identitat nana, involucrar-se en "Persones baixes d'Amèrica", adonar-se del que passava pels nans?
Then a friend of a friend of mine had a daughter who was a dwarf. And when her daughter was born, she suddenly found herself confronting questions that now began to seem quite resonant to me. She was facing the question of what to do with this child. Should she say, "You're just like everyone else but a little bit shorter?" Or should she try to construct some kind of dwarf identity, get involved in the Little People of America, become aware of what was happening for dwarfs?
I de cop i volta vaig pensar, la majoria de nens sords neixen de pares que senten. Aquells pares que senten intenten curar-los. Aquelles persones sordes descobreixen d'alguna forma una comunitat en la seva adolescència. La majoria de persones gais neixen de pares heterosexuals. Aquests pares heterosexuals normalment volen que funcionin en el que ells creuen que és el món corrent, i aquestes persones gais han de descobrir la seva identitat més tard. I allà estava un amic meu contemplant aquestes qüestions d'identitat amb la seva filla sorda. I vaig pensar, ja ho tenim de nou: una familia que es perceb com a normal amb un noi que sembla extraordinari. I vaig estar pensant que hi ha dos tipus d'indentitats.
And I suddenly thought, "Most deaf children are born to hearing parents. Those hearing parents tend to try to cure them. Those deaf people discover community somehow in adolescence. Most gay people are born to straight parents. Those straight parents often want them to function in what they think of as the mainstream world, and those gay people have to discover identity later on. And here was this friend of mine, looking at these questions of identity with her dwarf daughter. And I thought, "There it is again: a family that perceives itself to be normal with a child who seems to be extraordinary." And I hatched the idea that there are really two kinds of identity.
Hi ha identitats verticals, que es transmeten generacionalment de pares a fills. Aquestes són coses com la etnicitat, freqüentment la nacionalitat, la llengua, sovint la religió. Aquestes són coses que tens en comú amb els teus pares i amb els teus fills. I mentre que algunes d'elles poden ser difícils, no hi ha cap intent de curar-les. Podeu discutir que és més difícil als Estats Units, malgrat la presidència actual, ser una persona de color. I tot i així, no hi ha ningú que estigui intentant assegurar que la propera generació de nens nascuts d'americans asiàtics i africans tinguin la pell de color crema i el cabell groc.
There are vertical identities, which are passed down generationally from parent to child. Those are things like ethnicity, frequently nationality, language, often religion. Those are things you have in common with your parents and with your children. And while some of them can be difficult, there's no attempt to cure them. You can argue that it's harder in the United States -- our current presidency notwithstanding -- to be a person of color. And yet, we have nobody who is trying to ensure that the next generation of children born to African-Americans and Asians come out with creamy skin and yellow hair.
Aquestes són aquelles altres identitats que has d'aprendre entre companys. I les anomeno identitats horitzontals, perquè un grup de companys és una experiència horitzontal. Aquestes són les identitats alienes als teus pares i que has de descobrir quan les veus en els teus amics. I aquestes identitats, aquestes identitats horitzontals, la gent quasi sempre les ha intentat curar.
There are these other identities which you have to learn from a peer group, and I call them "horizontal identities," because the peer group is the horizontal experience. These are identities that are alien to your parents and that you have to discover when you get to see them in peers. And those identities, those horizontal identities, people have almost always tried to cure.
I volia veure quin era el procés a través del qual les persones que tenen aquestes identitats acaben tenint una bona relació amb elles. I em va semblar que hi havia tres nivells d'acceptància que havien de succeïr. Hi ha l'acceptació personal, l'acceptació de la família i l'acceptació social. I no sempre coincideixen.
And I wanted to look at what the process is through which people who have those identities come to a good relationship with them. And it seemed to me that there were three levels of acceptance that needed to take place. There's self-acceptance, there's family acceptance, and there's social acceptance. And they don't always coincide.
La major part del temps, les persones que tenen aquestes condicions estan molt enfadades perquè se senten com si els seus pares no els estimessin, quan el que en realitat ha passat és que els seus no els accepten. L'amor és una cosa que idealment és allà incondicionalment durant la relació entre un pare i un fill. Però l'acceptació és una cosa que porta temps. Sempre porta temps.
And a lot of the time, people who have these conditions are very angry, because they feel as though their parents don't love them, when what actually has happened is that their parents don't accept them. Love is something that, ideally, is there unconditionally throughout the relationship between a parent and a child. But acceptance is something that takes time. It always takes time.
Una de les persones nanes que vaig conèixer era un noi anomenat Clinton Brown. Quan va néixer, li van diagnosticar enanisme diastròfic, una afectació molt discapacitant, i als seus pares se'ls va notificar que mai no podria caminar, que mai no podria parlar, que no tindria cap capacitat intel·lectual, i que probablement mai no els reconeixeria. I se'ls va suggerir que el deixéssin a l'hospital per a què pogués morir allà tranquil.
One of the dwarfs I got to know was a guy named Clinton Brown. When he was born, he was diagnosed with diastrophic dwarfism, a very disabling condition, and his parents were told that he would never walk, he would never talk, he would have no intellectual capacity, and he would probably not even recognize them. And it was suggested to them that they leave him at the hospital
I la seva mare va dir que ella no ho faria. I es va emportar el seu fill a casa. I tot i que ella no tenia masses avantatges educatius o financers, va trobar el millor doctor del país per a enanisme diastròfic, i va aconseguir que en Clinton fos el seu pacient. I en el transcurs de la seva infància, va tenir 30 grans operacions de cirurgia. I va passar el seu temps atrapat en un hospital mentre tenia aquestes operacions, mitjançant les quals ara ja pot caminar.
so that he could die there quietly. His mother said she wasn't going to do it, and she took her son home. And even though she didn't have a lot of educational or financial advantages, she found the best doctor in the country for dealing with diastrophic dwarfism, and she got Clinton enrolled with him. And in the course of his childhood, he had 30 major surgical procedures. And he spent all this time stuck in the hospital while he was having those procedures, as a result of which, he now can walk.
I mentre estava allà, li van proporcionar tutors per ajudar-lo amb la seva feina escolar. I va treballar molt dur perquè no hi havia res més a fer. I va acabar arribant a un nivell que mai no havia estat contemplat per cap membre de la seva família. Va ser el primer de la seva família, de fet, que va anar a la universitat, on va viure al campus i conduïa un cotxe especialment dissenyat per al seu cos inusual.
While he was there, they sent tutors around to help him with his schoolwork, and he worked very hard, because there was nothing else to do. He ended up achieving at a level that had never before been contemplated by any member of his family. He was the first one in his family, in fact, to go to college, where he lived on campus and drove a specially fitted car that accommodated his unusual body.
I la seva mare em va explicar aquesta història de tornar a casa un dia i ell va anar a la universitat a prop i em va dir, "Vaig veure aquell cotxe, que sempre pots reconèixer, en una plaça de pàrquing d'un bar". (Riure) "I vaig pensar, ells fan sis peus d'alçada, ell en fa tres.
And his mother told me the story of coming home one day -- and he went to college nearby -- and she said, "I saw that car, which you can always recognize, in the parking lot of a bar," she said. (Laughter)
Dues cerveses per a ells són quatre cerveses per a ell." Va dir, "Sabia que no podia anar allà i interrompre'l, però vaig anar a casa, i vaig deixar-li vuit missatges al seu telèfon". Va dir, "I després vaig pensar, si algú m'hagués dit quan va néixer que la meva preocupació futura seria que ell anés a beure i conduís amb els seus companys d'universitat..."
"And I thought to myself, 'They're six feet tall, he's three feet tall. Two beers for them is four beers for him.'" She said, "I knew I couldn't go in there and interrupt him, but I went home, and I left him eight messages on his cell phone." She said, "And then I thought, if someone had said to me, when he was born, that my future worry would be that he'd go drinking and driving
(Aplaudiments)
with his college buddies ..."
(Laughter)
(Applause)
I li vaig dir, "Què creus que vas fer que va ajudar-lo a ser aquesta persona tan encantadora, brillant i meravellosa?" I ella em va dir, "Què vaig fer? El vaig estimar, això és tot. Clinton senzillament va tenir sempre una llum dintre seu. I el seu pare i jo vam ser suficientment afortunats de ser els primers a veure-la."
And I said to her, "What do you think you did that helped him to emerge as this charming, accomplished, wonderful person?" And she said, "What did I do? I loved him, that's all. Clinton just always had that light in him. And his father and I were lucky enough to be the first to see it there."
Ara citaré una altra revista dels anys 60. Aquesta és del 1968, de "The Atlantic Monthly, la veu de l'Amèrica liberal", escrit per un bioètic important. Va dir, "No hi ha cap raó per sentir-se culpable d'apartar un nen amb síndrome de Down, tant si és apartar en el sentit d'amagar en un manicomi com en un de més responsable, en un sentit letal. És molt trist, si... espantós. Però no porta culpa. La culpa veritable arriba només d'una ofensa contra una persona, i una síndrome de Down no és una persona".
I'm going to quote from another magazine of the '60s. This one is from 1968 -- "The Atlantic Monthly," voice of liberal America -- written by an important bioethicist. He said, "There is no reason to feel guilty about putting a Down's syndrome child away, whether it is 'put away' in the sense of hidden in a sanitarium or in a more responsible, lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down's is not a person."
Hi ha hagut molta controvèrsia amb l'enorme progrés que hem fet amb el tractament de les persones gais. El fet que la nostra actitud ha canviat és als titulars cada dia. Però ens oblidem com acostumàvem a veure les persones que tenien altres diferències, com acostumàvem a veure les persones amb discapacitats, com d'inhumanes crèiem que eren les persones. I el canvi que s'ha realitzat aquí, que és gairebé igual de radical, és un al qual no li prestem gaire atenció.
There's been a lot of ink given to the enormous progress that we've made in the treatment of gay people. The fact that our attitude has changed is in the headlines every day. But we forget how we used to see people who had other differences, how we used to see people who were disabled, how inhuman we held people to be. And the change that's been accomplished there, which is almost equally radical, is one that we pay not very much attention to.
Una de les famílies que vaig entrevistar, en Tom i la Karen Robards, es van quedar de pedra quan, com a novaiorquesos joves i amb èxit, van diagnosticar el seu primer fill amb síndrome de Down. Es pensaven que les oportunitats educatives per a ell eren les que no havien de ser, així que van decidir construir un petit centre, dues classes que van començar amb uns quants pares més, per educar els nens amb D.S. (síndrome de Down). I amb el temps, aquest centre es va convertir en l'anomenat Cooke Center, on ara s'ensenya a milers i milers de nens amb discapacitats intel·lectuals.
One of the families I interviewed, Tom and Karen Robards, were taken aback when, as young and successful New Yorkers, their first child was diagnosed with Down syndrome. They thought the educational opportunities for him were not what they should be, and so they decided they would build a little center -- two classrooms that they started with a few other parents -- to educate kids with DS. And over the years, that center grew into something called the Cooke Center, where there are now thousands upon thousands of children with intellectual disabilities
Amb el temps que ha passat des que l'article de l'Atlantic Monthly es va publicar, l'esperança de vida per a persones amb síndrome de Down s'ha triplicat. L'experiència de persones amb síndrome de Down inclou aquells que són actors, aquells que són escriptors, aquells que són capaços de viure de forma plenament independent en l'etapa adulta.
who are being taught. In the time since that "Atlantic Monthly" story ran, the life expectancy for people with Down syndrome has tripled. The experience of Down syndrome people includes those who are actors, those who are writers, some who are able to live fully independently in adulthood.
Els Robards van tenir molt a veure amb això. I vaig dir, "Us en penediu? Desitjaríeu que el vostre fill no tingués síndrome de Down? Desitjaríeu no haver-ne sentit mai a parlar?" És interessant que el pare digués, "Bé, per a en David, el nostre fill, me'n penedeixo, perquè per a en David, és una forma difícil de ser-hi al món, i m'agradaria donar a en David una vida més senzilla. Però penso que si perdéssim a tots els que pateixen de síndrome de Down, seria una pèrdua catastròfica".
The Robards had a lot to do with that. And I said, "Do you regret it? Do you wish your child didn't have Down syndrome? Do you wish you'd never heard of it?" And interestingly, his father said, "Well, for David, our son, I regret it, because for David, it's a difficult way to be in the world, and I'd like to give David an easier life. But I think if we lost everyone with Down syndrome,
I la Karen Robards em va dir, "Jo estic amb en Tom. Per en David, el curaria en un instant per donar-li una vida més senzilla. Però parlant per mi mateixa... bé, mai no hauria imaginat 23 anys enrere, quan va néixer, que arribaríem a aquest punt... Parlant per mi mateixa, m'ha fet millor persona, molt més amable i molt més útil en tota la meva vida, que parlant per mi mateixa, mai el deixaria per res del món".
it would be a catastrophic loss." And Karen Robards said to me, "I'm with Tom. For David, I would cure it in an instant, to give him an easier life. But speaking for myself -- well, I would never have believed 23 years ago when he was born that I could come to such a point. Speaking for myself, it's made me so much better and so much kinder and so much more purposeful in my whole life that, speaking for myself, I wouldn't give it up for anything in the world."
Vivim en un moment en què l'acceptació social per aquestes i moltes altres condicions creix i creix. I no obstant, també vivim en un moment en què la nostra habilitat per eliminar aquestes condicions ha arribat a una alçada que mai no vam imaginar. La majoria de nens sords nascuts ara als Estats Units rebran implants Cochlear, els quals es posen al cervell i es connecten a un receptor, i els permeten d'obtenir un facsímil de la facultat d'escoltar i utilitzar el discurs oral. Un compost que s'ha probat amb ratolins, BMN-111, és útil per evitar l'acció del gen de l'acondroplàsia. L'acondroplàsia és la forma més comuna d'enanisme, i els ratolins als quals se'ls hi ha donat aquesta substància i tenen el gen de l'acondroplàsia, créixen fins a una mida normal. Les probes amb humans estan molt aprop. Hi ha probes de sang que estan progressant que detectarien la Síndrome de Down durant l'embaràs abans i de forma més clara que mai fins ara, fent cada vegada més fàcil per a les persones eliminar aquests embarassos, o d'acabar amb ells.
We live at a point when social acceptance for these and many other conditions is on the up and up. And yet we also live at the moment when our ability to eliminate those conditions has reached a height we never imagined before. Most deaf infants born in the United States now will receive cochlear implants, which are put into the brain and connected to a receiver, and which allow them to acquire a facsimile of hearing and to use oral speech. A compound that has been tested in mice, BMN-111, is useful in preventing the action of the achondroplasia gene. Achondroplasia is the most common form of dwarfism, and mice who have been given that substance and who have the achondroplasia gene grow to full size. Testing in humans is around the corner. There are blood tests which are making progress that would pick up Down syndrome more clearly and earlier in pregnancies than ever before, making it easier and easier for people to eliminate those pregnancies,
I per tant tenim tant progrés social com progrés mèdic. I creiem en els dos. Jo crec que el progrés social és fantàstic, significatiu i meravellós, i penso que passa el mateix amb el progrés mèdic. Però crec que és una tragèdia quan un d'ells no veu l'altre. I quan veig la forma en què interseccionen en condicions com les tres que acabo de descriure, penso de vegades que és com aquells moments en una gran òpera quan l'heroi s'adona que estima l'heroïna en el precís moment en què ella està estirada expirant en un canapè.
or to terminate them. So we have both social progress and medical progress. And I believe in both of them. I believe the social progress is fantastic and meaningful and wonderful, and I think the same thing about the medical progress. But I think it's a tragedy when one of them doesn't see the other. And when I see the way they're intersecting in conditions like the three I've just described, I sometimes think it's like those moments in grand opera when the hero realizes he loves the heroine
(Riure)
at the exact moment that she lies expiring on a divan.
(Laughter)
Hem de pensar com ens sentim sobre aquestes cures en general. I la major part del temps, la qüestió de la paternitat és, què donem per vàlid en els nostres fills, i què volem curar en ells?
We have to think about how we feel about cures altogether. And a lot of the time the question of parenthood is: What do we validate in our children, and what do we cure in them?
Jim Sinclair, prominent activista de l'autisme, va dir: "Quan els pares diuen 'Desitjaria que el meu fill no fos autista', el que realment estan dient és 'Desitjaria que el fill que tinc no existís i en canvi tingués un fill diferent, no autista'". Llegiu això de nou. Això és el que sentim quan ploreu la nostra existència. Això és el que sentim quan pregueu per una cura... que el vostre major desitg per nosaltres és que un dia nosaltres deixarem d'existir i que els estranys que podeu estimar s'instal·laran darrera les nostres cares". És un punt de vista molt extrem, però assenyala la realitat en què les persones interactuen amb la vida que tenen i no volen ser curades o canviades o eliminades. Volen ser el que sigui que han arribat a ser.
Jim Sinclair, a prominent autism activist, said, "When parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the child I have did not exist and I had a different, nonautistic child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure: that your fondest wish for us is that someday we will cease to be, and strangers you can love will move in behind our faces." It's a very extreme point of view, but it points to the reality that people engage with the life they have and they don't want to be cured or changed or eliminated. They want to be whoever it is that they've come to be.
Una de les families que vaig enrevistar per aquest projecte va ser la família d'en Dylan Klebold, un dels perpetradors de la massacre de Columbine. Va costar molt de temps convèncer-los per parlar amb mi, i quan van acceptar, estaven tan cansats de la seva història que no podien parar d'explicar-la. I el primer cap de setmana que vaig passar amb ells, el primer de molts, vaig enregistrar més de vint hores de conversa.
One of the families I interviewed for this project was the family of Dylan Klebold, who was one of the perpetrators of the Columbine massacre. It took a long time to persuade them to talk to me, and once they agreed, they were so full of their story that they couldn't stop telling it, and the first weekend I spent with them, the first of many,
I el diumenge a la nit, estàvem tots esgotats. Estàvem asseguts a la cuina. La Sue Klebold estava preparant el sopar. I vaig dir, "Si en Dylan estigués ara aquí, tens idea del que t'agradaria preguntar-li?" I el seu pare va dir, "I tant. Li demanaria què dimonis pensava que estava fent". I la Sue va mirar a terra i va pensar per un minut. I després, va tornar a aixecar el cap i va dir, "Li demanaria que em perdonés per ser la seva mare i mai no saber què estava passant dins del seu cap".
I recorded more than 20 hours of conversation. And on Sunday night, we were all exhausted. We were sitting in the kitchen. Sue Klebold was fixing dinner. And I said, "If Dylan were here now, do you have a sense of what you'd want to ask him?" And his father said, "I sure do. I'd want to ask him what the hell he thought he was doing." And Sue looked at the floor, and she thought for a minute. And then she looked back up and said, "I would ask him to forgive me for being his mother and never knowing what was going on inside his head."
Quan vaig sopar amb ella un parell d'anys després, un dels molts sopars que vam tenir junts, em va dir, "Saps, quan va passar, acostumava a desitjar que mai no m'hagués casat, que mai no hagués tingut fills. Si no hagués anat a l'estat d'Ohio i el meu camí no s'hagués creuat amb el d'en Tom, aquest fill no hauria existit i això tan horrible mai no hauria passat. Però ara m'adono que l'amor que sentia pels meus fills va ser tan gran que no podria imaginar-me una vida sense ells. Reconec el dolor que els va causar als altres, pel qual no hi pot haver perdó, però el dolor que em va causar a mi, sí que es pot perdonar", va dir. "Així doncs, malgrat que reconec que hauria estat millor pel món si en Dylan mai no hagués nascut, he decidit que no hauria estat millor per mi".
When I had dinner with her a couple of years later -- one of many dinners that we had together -- she said, "You know, when it first happened, I used to wish that I had never married, that I had never had children. If I hadn't gone to Ohio State and crossed paths with Tom, this child wouldn't have existed, and this terrible thing wouldn't have happened. But I've come to feel that I love the children I had so much that I don't want to imagine a life without them. I recognize the pain they caused to others, for which there can be no forgiveness, but the pain they caused to me, there is," she said. "So while I recognize that it would have been better for the world if Dylan had never been born, I've decided that it would not have been better for me."
Vaig pensar que era sorprenent com aquestes famílies tenien fills amb tots aquests problemes, problemes que, en gran mesura, haurien fet el possible per evitar-los, havien trobat tant de sentit a la seva experiència com a pares. I després vaig pensar, tots nosaltres que tenim fills estimem els fills que tenim, amb els seus defectes. Si un àngel gloriós, de cop i volta, descendís del sostre del meu menjador i m'oferís d'emportar-se els fills que tinc i donar-me uns altres de millors, més educats, divertits, amables, intel·ligents, m'aferraria als meus fills i pregaria perquè aquest espectacle atroç se n'anés. I en el fons sento que de la mateixa forma que provem pijames piroretardants en un infern per assegurar-nos que no s'inflamaran quan els nostres fills arribin a l'estufa, les històries d'aquestes famílies negociant aquestes diferències extremes serveixen per reflexionar sobre la experiència universal de ser pares, quan de vegades mires al teu fill i penses, d'on has vingut?
I thought it was surprising how all of these families had all of these children with all of these problems, problems that they mostly would have done anything to avoid, and that they had all found so much meaning in that experience of parenting. And then I thought, all of us who have children love the children we have, with their flaws. If some glorious angel suddenly descended through my living-room ceiling and offered to take away the children I have and give me other, better children -- more polite, funnier, nicer, smarter -- (Laughter) I would cling to the children I have and pray away that atrocious spectacle. And ultimately, I feel that in the same way that we test flame-retardant pajamas in an inferno to ensure they won't catch fire when our child reaches across the stove, so these stories of families negotiating these extreme differences reflect on the universal experience of parenting, which is always that sometimes, you look at your child, and you think, "Where did you come from?"
(Riure)
(Laughter)
Resulta que mentre que cadascuna d'aquestes diferències individuals és aïllada hi ha tantes families que han d'enfrontar-se amb l'esquizofrènia, hi ha tantes famílies amb fills que són transexuals, hi ha tantes famílies amb prodigis... que també han d'encarar problemes similars en moltes formes, hi ha tantes famílies en cadascuna d'aquestes categories... però quan comences a pensar que l'experiència de negociar la diferència dins de la teva família és el que molta gent està afrontant, llavors descobreixes que és un fenomen quasi universal. Irònicament, resulta que les nostres diferències, i el nostre enfocament de la diferència, és el que ens uneix.
It turns out that while each of these individual differences is siloed -- there are only so many families dealing with schizophrenia, only so many families of children who are transgender, only so many families of prodigies -- who also face similar challenges in many ways -- there are only so many families in each of those categories. But if you start to think that the experience of negotiating difference within your family is what people are addressing, then you discover that it's a nearly universal phenomenon. Ironically, it turns out, that it's our differences and our negotiation of difference that unite us.
Vaig decidir tenir fills quan estava treballant en aquest projecte. I moltes persones estaven sorpreses i em deien, "Com pots decidir tenir fills quan estàs estudiant que tot pot sortir malament?" I vaig dir, "No estic estudiant que tot pot anar malament. El que estic estudiant és quant d'amor hi pot haver, fins i tot quan tot sembla que va malament".
I decided to have children while I was working on this project. And many people were astonished and said, "But how can you decide to have children in the midst of studying everything that can go wrong?" And I said, "I'm not studying everything that can go wrong. What I'm studying is how much love there can be, even when everything appears to be going wrong."
Vaig pensar molt sobre la mare d'un fill amb discapacitats que havia vist, un noi amb una discapacitat severa, que va morir degut a una negligència d'un cuidador. I quan les seves cendres van ser enterrades, la seva mare va dir: "Prego aquí pel perdó, per haver estat la víctima de dos robatoris, una pel fill que vaig voler, i l'altre pell fill que vaig estimar". I vaig veure que era possible que tothom estimés un fill si tenien una voluntat efectiva per a fer-ho.
I thought a lot about the mother of one disabled child I had seen, a severely disabled child who died through caregiver neglect. And when his ashes were interred, his mother said, "I pray here for forgiveness for having been twice robbed: once of the child I wanted, and once of the son I loved." And I figured it was possible, then, for anyone to love any child, if they had the effective will to do so.
Així que el meu marit és el pare biològic de dos fills amb unes amigues lesbianes de Mineàpolis. Una amiga meva propera de la universitat es va divorciar i volia tenir fills. Així que ella i jo tenim una filla, i la mare i la filla viuen a Texas. I el meu marit i jo tenim un fill que viu amb nosaltres tot el temps del qual jo en sóc el pare biològic, i el nostre substitut en l'embaràs va ser la Laura, la mare lesbiana de l'Oliver i la Lucy a Mineàpolis.
So, my husband is the biological father of two children with some lesbian friends in Minneapolis. I had a close friend from college who'd gone through a divorce and wanted to have children. And so she and I have a daughter, and mother and daughter live in Texas. And my husband and I have a son who lives with us all the time, of whom I am the biological father, and our surrogate for the pregnancy was Laura, the lesbian mother of Oliver and Lucy in Minneapolis.
(Aplaudiments)
(Laughter)
So --
Per abreviar, hi ha cinc pares amb quatre fills en tres estats.
(Applause)
The shorthand is: five parents of four children in three states.
I hi ha persones que pensen que l'existència de la meva família d'alguna forma perilla o dificulta o fa mal a la seva família. I hi ha persones que pensen que famílies com la meva no haurien d'existir. I no accepto models de sostracció d'amor, només d'addició. I crec que de la mateixa manera que necessitem diversitat d'espècies per assegurar que el planeta pot continuar, també necessitem diversitat d'afecció i diversitat de família per tal d'enfortir la nostra ecosfera d'amabilitat.
(Laughter) And there are people who think that the existence of my family somehow undermines or weakens or damages their family. And there are people who think that families like mine shouldn't be allowed to exist. And I don't accept subtractive models of love, only additive ones. And I believe that in the same way that we need species diversity to ensure that the planet can go on, so we need this diversity of affection and diversity of family in order to strengthen the ecosphere of kindness.
El dia en què el nostre fill va néixer, la pediatra va entrar a l'habitació de l'hospital i va dir que estava preocupada. [El nostre fill] no estenia les seves cames de forma apropiada. Va dir que això podia significar que tenia un problema cerebral. En la mesura que les extenia, ho feia de forma asimètrica, motiu pel qual ella va pensar que podia tenir un tumor. I tenia un cap molt gran, per la qual cosa va creure que podia tenir hidrocefàlia.
The day after our son was born, the pediatrician came into the hospital room and said she was concerned. He wasn't extending his legs appropriately. She said that might mean that he had brain damage. Insofar as he was extending them, he was doing so asymmetrically, which she thought could mean that there was a tumor of some kind in action. And he had a very large head,
I mentre ella em deia totes aquestes coses, anava sentint com el centre de la meva existència es vessava al terra. I vaig pensar que havia estat treballant durant anys en un llibre sobre el sentit que les persones havien trobat en la experiència de ser pares amb fills discapacitats, i no volia unir-m'hi. Perquè m'estava enfrontant la idea de malaltia. I com tots els pares des de l'inici dels temps, volia protegir el meu fill de la malaltia. I també em volia protegir a mi mateix de la malaltia. I no obstant sabia, per la feina que havia fet que si tenia alguna de les coses per les quals començaríem a fer-li probes, que aquestes serien, finalment, la seva identitat, i que si eren la seva identitat, passarien a ser la meva identitat, que aquella malaltia tindria una forma diferent quan es desenvolupés.
which she thought might indicate hydrocephalus. And as she told me all of these things, I felt the very center of my being pouring out onto the floor. And I thought, "Here I had been working for years on a book about how much meaning people had found in the experience of parenting children who were disabled, and I didn't want to join their number because what I was encountering was an idea of illness." And like all parents since the dawn of time, I wanted to protect my child from illness. And I wanted, also, to protect myself from illness. And yet, I knew from the work I had done that if he had any of the things we were about to start testing for, that those would ultimately be his identity, and if they were his identity, they would become my identity,
El vam portar a la màquina de ressonància magnètica, el vam portar a a fer-li un TAC, vam portar aquest nadó d'un dia per a què li traguessin sang. I ens vam sentir vençuts. I després de cinc hores, ens van dir que el seu cervell estava bé i que ja podia estendre les cames correctament. I quan vaig demanar a la pediatra què havia estat passant, em va dir que al matí es pensava que ell havia tingut probablement una enrampada.
that that illness was going to take a very different shape as it unfolded. We took him to the MRI machine, we took him to the CAT scanner, we took this day-old child and gave him over for an arterial blood draw. We felt helpless. And at the end of five hours, they said that his brain was completely clear and that he was by then extending his legs correctly. And when I asked the pediatrician what had been going on,
(Riure)
she said she thought in the morning, he had probably had a cramp.
Però vaig pensar com la meva mare tenia raó.
(Laughter)
But I thought --
Vaig pensar, l'amor que tens pels teus fills és diferent de qualsevol altre sentiment en el món, i no és fins que tens fills, que pots saber com és.
(Laughter) I thought how my mother was right. I thought, "The love you have for your children is unlike any other feeling in the world. And until you have children, you don't know what it feels like.
Penso que els nens em van atrapar en el moment en què vaig connectar la paternitat amb la pèrdua. Però no estic segur si hauria vist que si no hagués estat tan endinsat en el meu projecte de recerca, m'hauria trobat amb tant d'amor estrany, i vaig caure naturalment en els seus patrons embruixadors. I vaig veure com l'esplendor pot il·luminar inclús les vulnerabilitats més miserables.
I think children had ensnared me the moment I connected fatherhood with loss. But I'm not sure I would have noticed that if I hadn't been so in the thick of this research project of mine. I'd encountered so much strange love, and I fell very naturally into its bewitching patterns. And I saw how splendor can illuminate even the most abject vulnerabilities.
Durant aquests 10 anys, vaig ser testimoni i vaig aprendre la joia aterradora de la insuportable responsabilitat, i em vaig adonar que conquereix tota la resta. I tot i que de vegades havia pensat que els pares que estava entrevistant eren bojos, esclavitzant-se a si mateixos al viatge d'una vida amb els seus fills ingrats, i intentant trobar la seva identitat des de la misèria, vaig comprendre aquell dia que la meva investigació m'havia construït un tauló i que ja estava preparat per unir-me al seu vaixell.
During these 10 years, I had witnessed and learned the terrifying joy of unbearable responsibility, and I had come to see how it conquers everything else. And while I had sometimes thought the parents I was interviewing were fools, enslaving themselves to a lifetime's journey with their thankless children and trying to breed identity out of misery, I realized that day that my research had built me a plank and that I was ready to join them on their ship.
Gràcies.
Thank you.
(Aplaudiments)
(Applause and cheers)