也是一只自由泳的小鸟
“Though we used different signed languages, these Chinese Deaf people and I could make ourselves understood; and though we came from different countries, our mutual Deaf culture held us together. By the end of the evening we’d talked about Deaf life in China, and about Chinese politics.” I nodded. “You couldn’t do that in China,” he said. “No hearing person could. So who’s disabled then?”
Betty Adelson, recently asked by journalist Lynn Harris what people of short stature prefer to be called, said, “Most individuals prefer simply to be called by their given names.”
As a child, Jake would sometimes weep, saying, “I don’t want to be little.” Leslie wanted to cry, too. “What would be wrong about letting him know that you hurt for him, too?” she said. “You don’t want your child to perceive that you think his situation is hopeless, but also you don’t want to deny his experience. A few times, I’ve said, ‘Have you talked to your daddy about this?’ ‘No, I’m crying ’cause I don’t want to be like me, which means I don’t want to be like him. That would hurt his feelings.’”
父亲是侏儒，小孩也是也是侏儒，小孩不希望自己是侏儒，很难过，但是他没有跟爸爸讲，因为不想当一个侏儒就意味着他不想跟爸爸一样，这样会让爸爸伤心，好善解人意的小孩子
LPA (Little People of America) and similar organizations can be a blessing, though they can, equally, be a trial; Ablon points out that attending LPA can traumatize people who have blamed all their problems on their dwarfism, and who must now come to terms with personal flaws.
On the LPA website, one woman complained about the difficulty of not being able to kiss an AP or look into his eyes while they were having sex. Harry Wieder said, “For people of equal height, what is mysterious is the lower body, which you have to reach for—that’s what’s sexualized. For me, it’s the opposite. I look at people below the waist all day every day, and my idea of intimacy is the special occasion of looking someone in the face. The feeling when having sex with APs (average people) that I needed to relate to the bottom half of the body, and not relate so much to the top half, was problematic.”
“Raising a kid like Jason,” she said, “the kid is the least of the challenges. Jason was there to put his arms around me when the bureaucracies had nearly killed me.” Services are seldom available to anyone who does not have the wherewithal to battle agencies. Doing so often requires education, time, and money—which is a painful irony given that these services are intended to benefit people who may be short on all three.
这一章在讲一个有唐氏综合征的孩子，他妈妈在育儿方面非常积极，从小给他各种丰富的刺激，促进智力的发育，结果他就真的很聪明，七岁的时候会用 12 种语言数到 10，讲话没问题，在学校里也是模范学生。以上都是他付出了比常人多得多的努力的结果。然而渐渐地就发现他在理解人类社会方面问题很大，比如他会到处拥抱陌生人，会想开一家店专门告诉顾客某部电影的主旨。学校里的孩子们不喜欢他，工作之后因为独特的工作方式也很不招人待见。他比绝大多数唐氏综合征的人都聪明，但是对健全人类来说他又太笨了，所以就完全没有同类。
但看到书中的描写我没有觉得他很笨，他就是没有正常人那些条条框框，比如这一段：
Jason found his first job at Barnes & Noble, tearing the covers off magazines destined for recycling. He found it excruciatingly boring and kept making up ways to amuse himself. When his supervisor insisted that this was not his job, he replied, “I’m an independent adult person and I make my own decisions”—showing the very spirit that Charles and Emily had fostered, applied in exactly the wrong context. He was fired soon thereafter.
哇 “I’m an independent adult person and I make my own decisions” 这句话哪里说得不对吗？？
还有他妈妈纠结自己坚持把孩子教育成高功能有没有错的这一段：
A couple of years later, Jason was depressed again, and Emily reflected with concern on her original attempt to make Jason the highest-functioning DS kid in history. She said, “With perfect hindsight would I have done it differently? His intelligence has enriched our relationship so much and I would never want to give that up, but I’ll admit that lower-functioning Down kids are happier, less obsessed with how unfair it is. They have an easier time in many ways, but is that better? He takes such pleasure in words, in using his mind.” I went to a reading at Barnes & Noble that Jason and his friend did when their book was reissued. Jason answered the audience’s questions with fluency and poise. Emily was aglow and Jason was aglow, their pleasure in his intelligence a mutual delight.
总之感觉是一个很好的人，是社会不够接纳他。
“Prenatal diagnosis reinforces the medical model that disability itself, not societal discrimination against people with disabilities, is the problem to be solved. Prenatal genetic testing followed by selective abortion is morally problematic and it is driven by misinformation.”
I know from personal experience how kind sympathy can be a noxious prejudice; I do not care to spend time with people who pity me for being gay, even if their sympathy reflects a generous heart and is offered with egregious politesse.
“I was so sure I was the parent who was not going to be able to deal with a child who was in any way different,” she said. “I was just relieved to love her. She was very lovable. All my friends had these children they thought were perfect, and then they’ve had to come to terms with their children’s limitations and problems. I had this baby everyone thought was a disaster, and my journey has been to find all the things that are amazing about her. I started off knowing she was flawed, and all the surprises since then have been good ones. She’s one of the nicest, kindest, most thoughtful, sensitive people that I’ve ever met. She’s funny. She always highlights the positive; I don’t know how much of that is personality or if that’s Down syndrome. When she makes up her mind that she’s not doing something, that is that, which is also typical of Down syndrome.”
In this world of infinite variety, Catherine was just another variation on the idea that the only normality is nonnormality.
Cece has actually spoken four times in her life, and every time the words were appropriate to the situation. When Cece was three, Betsy gave her a cookie; she pushed it back at her, saying, “You eat it, Mommy.” Jeff and Betsy exchanged glances and waited for their world to change. Cece said nothing more for a year. Then one day Betsy stood up to turn off the TV, and Cece said, “I want my TV.” At school, three years later, she turned on the lights and said, “Who left the lights on?” Then one day a puppeteer visited Cece’s class; when he asked, “Hey, kids! What color is the curtain?” Cece responded, “It’s purple.” The capacity to formulate and deliver these sentences suggests a tantalizing lucidity below the silence.
我突然想起小时候听到的一个笑话，说是一个小孩子一直不开口说话，家人都以为他哑巴，直到有一天吃饭的时候他说：菜太咸了。家人都惊了，问他之前怎么都不说话，他说之前没有什么好抱怨的。
我现在感觉这不是个笑话，这小孩是不是自闭症…
One clinician told me about a patient who at age ten ran into the street in the middle of traffic, nearly getting run over and causing an accident. His mother said, “But I told you to look both ways before you step into the street!” He said, “I did look both ways.” A psychiatrist I met described a patient who was a math genius, IQ 140, fully verbal, but socially disabled. When the pretty woman at the counter at McDonald’s asked what he’d like today, he said, “I’d like to touch your crotch, please.” He was completely befuddled when the police were called; he had answered her question and said “please.”
虽然早就听说阿斯伯格人倾向于理解字面意思，但也没想到能字面到这个地步…
还有一个例子是一个小孩从来没有使用过语言，却在十三岁的时候开始打字
为什么这么多自闭症喜欢涂屎…已经听了三例了…
这本书是按病例分章节的，现在就是听完了“侏儒”觉得“聋”不是什么大毛病，听完“唐氏综合征”觉得“侏儒”不是大毛病，现在在听“自闭症”，感觉“唐氏综合征”也不是什么大毛病了
A study conducted at Yale found that in adults with autism or Asperger’s, the region of the brain activated during face processing corresponded to the region activated in nonautistic subjects during object processing. Autistic people with fixations, however, may recognize those in the area where most people register faces. So one autistic boy had the same region in his brain light up for his mother as for a teacup. But he was enthralled by Japanese Digimon characters, and when he saw those, the area where most of us process our intimate connections suddenly flashed on.
妈妈 = 茶杯，数码宝贝 = 亲密，这妈得多难过
这本书里的缩写太让我难受了，ASL = American Sign Language, AP = Average People, DS = Down Syndrom, FC = Facilitated Communication, EI = Early Intervention… 我明白你们业内人士这么叫方便，但是，呃，好难受，好讨厌缩写
嗯好像不讲话而是打字是自闭症常见症状…
怎讲，我也有那种完全没办法开口讲话，一定要打字的时候。也不是说我有自闭症那么严重，但感觉要是没有这样的经历的话就很难理解为什么明明可以讲话却选择不讲…
“He still thinks that if he acts like he’s normal, he’ll be treated more normally by the world. All it means is that he doesn’t get as much help as he needs.”
哎呀，这本书里访问的都是些有钱人
I got the best doctors in the world, I got the best educational people, I got forty hours of treatment a week, which was the most anyone had ever gotten.
Harry, who is not tall, weighed 220 pounds; […] after about six months, he put himself on a diet and started running. […] Kitty said. “Suddenly it dawned on me, why isn’t there a fitness center there?” Kitty raised the money to build one.
PS 这一段是关于精神分裂症的
He’s well enough to know that he shouldn’t tell other people the voices are real, but not well enough to believe it himself. […] He and I also discuss a real hurdle he has not overcome, which is that he doesn’t really want to stop listening to them. Even though they scare him, they’ve been friends.”
还有好多案例是知道自己孩子有病之后就去查资料，然后建立了帮扶组织/学校并成为了 president or 找到了帮扶组织/学校并成为了 president…
作者是不是专门去采访 presidents 啊
其实读到这本书里关于唐氏综合征和自闭症的案例，我会觉得其实挺像小猫小狗的，比如和周围人沟通困难，会乱喊乱叫，会搞破坏；但好的时候又特别好，比如唐氏综合征的孩子性格普遍善良可爱，自闭症小孩虽然可能不会表达爱意，但是对熟悉的人还是偶尔会亲吻、拥抱、依偎在身旁，感觉真的很像小猫小狗。所以为什么人类对小猫小狗的情感那么正面，却很难接受举止类似的人类小孩，是因为对人类会有不一样的期待吗…（如果有冒犯的话先道个歉，目前还不是很了解这些病症，而且个体的差异性也很大
）
The dangers of seeing disability entirely as illness and not at all as identity are starkly evident in the explanation Dr. Karen McCarron gave for suffocating her three-year-old daughter, Katie, in 2008. She said, “Autism left me hollow. Maybe I could fix her this way, and in heaven she would be complete.” […] Katie McCarron’s paternal grandfather has responded to such rationalizations with indignation. “Some newspapers have reported that this was done to end Katie’s pain; let me assure you that Katie was not in pain,” he wrote. “She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses, and laughter. I am positively revolted when I read quotes that hint at condoning the taking of my granddaughter’s life.”
可能这本书里写的有钱人偏多，这里有非常多正面积极的例子，给我一种“我能接受我的小孩是这个样子”的感觉。书里谈到很多父母做产检的时候发现小孩有缺陷，很纠结到底要不要打掉。我看了里面各种讨论之后心想“如果是我的话应该不会打掉”，然而我根本就没打算要小孩，想过如果意外怀孕的话就立即打掉？？
这又是什么矛盾认知…能接受病症小孩不接受普通小孩？
“My advice is to have another kid,” Eve said. “So you know what it feels like to have it how it’s supposed to be.”
这里面真的好多生下了有缺陷的孩子的父母最后都会再要一两个孩子…我还以为一般会害怕基因缺陷不敢再要呢…后出生的孩子里确实也不乏出了一样毛病的
@Friedo 草，这是野史还是真的…确实有看到说爱因斯坦疑似阿斯伯格的说…
@unagi 嗯…但这本书里解释为德国人话少也挺搞笑的 
@[email protected] fc=full combo!
@[email protected] 抱歉音游人一下激动了没交代上下文 😆
@unagi 我看到这条po也觉得好难受因为这些缩写还和我日常通用的完全不一样！对我来说 ASL = Azienda Sanitaria Locale (地方卫生局), AP = Applied Physics, DS = Data Science...
@naroix 点头如捣蒜，随便查个什么缩写维基平均就有十个不同词条
@naroix 啊我才发现你头像上那件衣服上写的是 fuck you 吗
@unagi 哈哈哈你不说我都没发现耶！！！！
腐坏铆菇
扣扣扣你知道八九学运吗
@unagi 我之前有个客户，孩子有个很罕见的皮肤病，加拿大没有专家，只能自己攒钱看，每次购物都会投一毛钱到自己的小金库里谁是要成立组织让其他同病症的孩子也能看病。
@unagi 那你意外怀孕的小孩是生病小孩你会留下吗？
@ChuckL 我现在只能靠想象，如果真怀孕了那一系列激素应该会影响我的抉择…
反正我觉得我现在是没有能力养小孩的，但也许政府的帮扶会还不错呢
@unagi 你是因为觉得能力不够不想要么~啊~所以你本身是喜欢小朋友的？
@ChuckL 其实我每年心态都在发生变化，所以也不好说。
目前是觉得不会因为一个小孩子是小孩子就喜欢或者不喜欢，但是我会喜欢某些性格特别可爱的小孩子，但这样好像就和喜不喜欢某个成人也一样。我也不能确信我生下来的小孩我就会喜欢，或者这个小孩会喜欢我；而且我老在思索我妈为什么要生下我，我不想被生成一个人类。如果我一直琢磨不清楚这个问题，我会害怕我的小孩也这样问我然后我答不上来。
所以目前大概是不会计划着要孩子，但如果以后有能力了然后又意外怀孕也许会留下来，看到时候的心境 
@unagi 喔~所以很好哇你的想法！
@unagi 家里有同辈长我几岁的亲戚是脑瘫儿，几乎从来没见过，也就小时候会把她带出来“放风”，我觉得认识的人对她的恐惧——真的是恐惧，甚至那对夫妻就再没有生过小孩——有点雷同于恐怖谷效应，那是长着和他们相似的脸，相似的身体的东西。虽然像养动物一样养她，并且在朴素道德下养的还算比新闻里好，但感觉像是在养偶尔像人的东西，而不是偶尔像猫狗的东西。
@xzr_5231 你提“恐怖谷”这个词我就能理解了…好像人还是很难摆脱“长成某个样子的东西就应该做某种事”的认知，并不是嘴上说着“人就是有多样性的”实际上就能接受。
@unagi 但其实也只是表雷同啊，和恐怖谷又不太一样，如果光是浅显了讲的话就太不人道了，哪怕是脑瘫儿也会感到痛苦的，我家人曾提过她会在半夜喘着哭音在客厅一阵一阵徘徊，虽然这样说显得特别恐怖片，但实际上那种没办法表达出来的痛苦比恐怖片更痛苦吧
@xzr_5231 可能同类之间有办法理解呢？书里面提到了这样的组织，经常会办一些聚会
@unagi 这个聚会其实是负能量共享会啦，没什么用的……而且一般是失能者的健全关系人之间的聚会，很大一部分和自闭症患者相似，就像最广为人知的星星的孩子组织里更多的也是对星星的父母家人的“驯化”而已。
很悲观来说，我的观点是健全人没办法用完全不猎奇的眼光看待他们，只能尽可能用不那么猎奇的心态去理解，或者干脆提前杀掉她好了，其实哪怕这世界上忽然建立失能者王国，恐怕也是迪士尼乐园之类的动物园景点吧。
Ps：我的同辈亲戚姐姐是平凡普通有点蠢地长到学龄才在学校被无故刺激成脑瘫儿的，这样看是不是干预的太晚？但她在特校上到初中，到了初中也有人转来((
@xzr_5231 我看到唐氏综合征里也有智商高的，能独立生活的。为了避风险提前流产倒是可以，但那现在还活着的或者父母因为不知情生下的怎么办..我觉得应该多给大众接触这些人的机会，大部分的恐惧应该都是源于不了解..有那种混合的学校
刚查了一下唐氏综合征和脑瘫也不是一回事，脑瘫主要是躯体上的问题，智力问题不是很严重。
@unagi 啊，所有的解决途径都是祛魅的，但这也太理想了uu👀就不说人权普低的东亚，就连北欧国家的落地无障碍化目前也只普及到躯体障碍啊👀
@mengminghan @xzr_5231 我也觉得人类本身蛮丑的所以这是因为颜控？？
@unagi 可能还有个原因是人对于看上去跟自己相似的对象宽容度就是低一些，人类用更宽容的心态对待动物的一个原因是，你知道你对它好它就会对你好，不会挑剔你的美丑胖瘦贫富，你对它不好它也不会存心恨你，只会躲着你，有了这些前提的话，你对它其他方面的宽容度就比对人高得多了，但对人的话，在你确定这个具体的人是否具备这些前提之前，你始终会用看待普遍吃了智慧果的人的严苛的标准去对待一个人。。
simultaneous language 我立刻想到七肢桶
之前知道有 Pidgin Language，但是没想到竟然还有 Pidgin Signed English