親，特別推薦·不完美亦美

By+Carly+Findlay++Jasmine

Disability and visible difference can be confronting because people are not used to seeing and experiencing relationships with disabled and visibly different people. They see visible difference and disability in the media and assume hero status， or a life to be pitied， or worse—a villain1） status.

While some of you may be curious about people who have a visible difference or a disability， and there may be a certain level of discomfort when you encounter us—for the fear of the unknown—please don't forget your manners when you interact with us. Talk to us like you would talk to those "normal" people. As a person born with a severe skin condition called Ichthyosis， this is how I'd like to be spoken to：

由于人們并不習慣看到殘疾人和外貌特殊的人，也不習慣與他們相處，殘疾和特殊的外貌可能會讓人不知如何面對。人們在媒體上看到外貌特殊的人和殘疾人時，或想當然地把他們看作英雄，或憐憫他們的人生，或是更糟——將他們看作惡棍。

你們有些人可能對外貌特殊的人或殘疾人感到好奇，在遇到我們的時候可能會有一定程度的不適——因為不了解而恐懼——但請你們在與我們交流時不要忘了你們的禮貌。同我們說話時，請像跟那些“普通”人說話時一樣。作為一個生來就患有一種叫做魚鱗癬的嚴重皮膚病的人，我希望別人能這樣跟我說話。

If we say hello， say hello back.

如果我們主動問候，請向我們回以問候。

Our initiation2） of a friendly conversation does not give you a right to launch into commenting on our appearance or asking why we look the way we do. I will probably answer your questions—to a limited extent. We don't have to tell you the most personal things about our lives during our first encounter. Don't initiate conversation about our appearance before we do. 我們主動發起一次友好的談話并不意味著你有權利開始對我們的外貌大加評論或是探尋我們變成現在這樣的原因。我可能會回答你的問題——在有限的范圍內。我們沒有必要在第一次見面時就告訴你我們生命中最隱私的事情。在我們主動提起之前，請不要談論我們的外貌。

1. villain [?v?l?n] n. 惡棍

2. initiation [??n??i?e??n] n. 發起

3. platitude [?pl?t?tju?d] n. 老生常談，陳詞濫調

4. cosmetic [k?z?met?k] adj. 裝飾性的

5. saintly [?se?ntli] adj. 圣人似的；至善的

6. swear [swe?（r）] vi. 咒罵

7. gobsmacked [?ɡ?bsm?kt] adj. 驚呆了的，吃驚的

8. audacity [???d?s?ti] n. 魯莽

9. preface [?pref?s] vt. 作為……之開端；開始

10. disfigurement [d?s?f?ɡ?（r）m?nt] n. （有損容貌的）缺陷

Don't give us a platitude3）. 不要對我們說些陳詞濫調。

Don't say： "At least it's not [insert any illness here]"， "It's great to see you out and about"， or "You're lucky you look normal （Normal is just a cycle on the washing machine， right？）". And certainly don't tell us you couldn't handle having our condition. Often when I tell people I am not sunburnt but was born with a severe skin condition， they say， "At least it's not sunburn. I was worried you got yourself so burnt." There's no comprehension （or apology for their initial question） that my condition has any impacts on my health other than the cosmetic4） appearance. 不要說“起碼你得的不是[此處可插入任何疾病]”“看到你能出來活動真是太好了”或是“你真幸運，看著跟普通人沒兩樣（“普通”不過是洗衣機的一種循環模式，不是嗎？）”。當然也不要跟我們說，如果你得了我們這種病會束手無策。當我告訴別人我現在這樣不是因為曬傷，而是生來就有的嚴重皮膚病，他們的回答通常是：“起碼不是曬傷，我還擔心你怎么把自己曬成這樣。”我的病除了會影響到外貌還會對我的健康有什么影響，他們一點都不理解（他們對最初的提問也毫無歉意）。endprint

Don't be offended if we aren't always polite in answering your question about our disability or visible difference—especially WHEN WE HAVE ONLY JUST MET YOU！

在你問及關于我們的殘疾或是特殊的外貌時，如果我們不總是禮貌作答，請不要覺得被冒犯了——特別是如果我們才剛見面！

I am not going to be polite all the time. Us disabled people， we aren't always saintly5）. We swear6）， we are rude， and we get angry. And so if I'm rude back to you， it's probably because I'm gobsmacked7） at the audacity8） of people feeling like they can comment on a stranger's appearance. 我不會時刻都保持禮貌。我們這些殘疾人并不總像圣人一般。我們會罵臟話，我們會行事粗魯，我們也會生氣。所以如果我以粗魯的言行回敬你，原因很可能是我被一些人的魯莽震驚了——他們覺得自己可以對一個陌生人的外貌指指點點。

If you have got to ask， do it politely.

如果你一定要問的話，請做到禮貌相詢。

If you ask， preface9） the question with "I hope you don't mind me asking ..." or "Tell me if I'm being rude". Certainly leave this question until after polite hellos are exchanged. And thank us for taking the time to tell you about ourselves. I know that sometimes you're just dying to know what's wrong with us. And as much as I hate that expression "what's wrong with us"， sometimes I'm curious about people's appearance too. But I don't ask. There's a girl I see around. She has a facial disfigurement10）. I smile at her； she smiles back. We probably experience similar reactions as we walk down the street. But it doesn't matter to me that I don't know what's "wrong" with her. Because， there's nothing wrong， and she doesn't want to be bothered by my question about her appearance. She's just getting on with her day too. 如果你要問，請這樣開始發問“我希望您不介意我問一下……”或者“如果這樣問冒犯了您，請一定要告訴我”。當然，這樣的問題要留待互相交換禮貌的問候之后再提，而且還要感謝我們愿意花時間告訴你我們自身的情況。我知道有時你們只是太渴望知道我們出什么問題了。我討厭“我們出什么問題了”這樣的說法，一如有時我也會對別人的外貌感到好奇，不過我不會去問。我在附近碰到一個女孩，她有面部缺陷。我會沖她笑笑，她也回我一笑。我們走在大街上可能會有相似的遭遇。但我不知道她的“問題”這件事對我來說并不重要。因為她本來就沒有什么問題，而她也不想被我關于她外貌的問題打擾。她也只是在過她自己的生活而已。endprint