濒危的侏儒
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辉格 @ 2020-10-01 21:33  阅读(1,602)  评论   分类：未分类        

【2020-10-01】

@whigzhou: 一种治疗软骨发育不全症（achondroplasia）的药物最近三期临床试验，效果和安全性看起来都不错，软骨发育不全症是导致侏儒的主要原因（约占70%，其余多为生长激素缺乏所致），这预示着，侏儒症或许在一代人之内便会消失。

你可能会觉得，这当然是个好消息，错了，很多人表示他们并不开心，或至少十分担忧，包括几个侏儒协会的领导，侏儒权益活动家，研究侏儒身份认同及相关伦理问题的哲学教授……，详情可见卫报的这篇报道：

这个故事对我们理解平权运动，平权活动家，身份政治，当代进步主义……，都是一个极好的观察窗口，摘录几段颇有代表性的评论：

Leah Smith, a spokeswoman for Little People of America (LPA)——
People like me are endangered and now they want to make me extinct.

Mark Povinelli, president of the LPA——
the drug “is one of the most divisive things that we’ve come across in our 63-year existence”

Gillian Martin, a tutor and chair of the Restricted Growth Association, the British charity that supports people with dwarfism——
“people who are genuinely afraid of where this could lead”

Joe Stramondo, a professor of philosophy at San Diego State University and a disability rights activist——
We recognise our situation as being one of oppression, and of being subjected to stigma as being the main source of our difficulty in the world. When you have that community, that sounding board, you’re going to have more pushback to a drug like this.

Erin Pritchard, lecturer in disability and education at Liverpool Hope University, who has achondroplasia——
But to get rid of my identity as a person with dwarfism, to make me grow so that I fit in society and I don’t get stared at, pointed out, laughed at, photographed, I think that’s where it gets problematic, because I should not have to change to fit in with a prejudiced society.

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【2020-10-01】 @whigzhou: 一种治疗软骨发育不全症（[[achondroplasia]]）的药物最近三期临床试验，效果和安全性看起来都不错，软骨发育不全症是导致侏儒的主要原因（约占70%，其余多为生长激素缺乏所致），这预示着，侏儒症或许在一代人之内便会消失。 你可能会觉得，这当然是个好消息，错了，很多人表示他们并不开心，或至少十分担忧，包括几个侏儒协会的领导，侏儒权益活动家，研究侏儒身份认同及相关伦理问题的哲学教授……，详情可见卫报的这篇报道： 这个故事对我们理解平权运动，平权活动家，身份政治，当代进步主义……，都是一个极好的观察窗口，摘录几段颇有代表性的评论：

Leah Smith, a spokeswoman for Little People of America (LPA)—— People like me are endangered and now they want to make me extinct.

Mark Povinelli, president of the LPA—— the drug “is one of the most divisive things that we’ve come across in our 63-year existence”

Gillian Martin, a tutor and chair of the Restricted Growth Association, the British charity that supports people with dwarfism—— “people who are genuinely afraid of where this could lead”

Joe Stramondo, a professor of philosophy at San Diego State University and a disability rights activist—— We recognise our situation as being one of oppression, and of being subjected to stigma as being the main source of our difficulty in the world. When you have that community, that sounding board, you’re going to have more pushback to a drug like this.

Erin Pritchard, lecturer in disability and education at Liverpool Hope University, who has achondroplasia—— But to get rid of my identity as a person with dwarfism, to make me grow so that I fit in society and I don’t get stared at, pointed out, laughed at, photographed, I think that’s where it gets problematic, because I should not have to change to fit in with a prejudiced society.


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