实际上我们不需要消除残疾

In 1816, Mary Godwin (later known as Mary Shelley) began to pen the manuscript for what would be both her debut and her magnum opus: Frankenstein. In Godwin’s novel, a student named Victor Frankenstein is agitated by the recent death of his mother, which serves as the impetus to his hyper-fixation on preternatural theories of biology. Most people who are passingly familiar with the Frankenstein story know that Victor recreates the effigy of a humanoid out of multiple human corpses and other remnants and, by some manner of inexplicable science, reanimates his creation. Most popular and modern versions of the Frankenstein story vary from here, but the end result is generally the same: the reanimated creature embarks on a rampage fueled by acute awareness of their abnormal existence and leaves a wake of tragedy and death either leading right back to Victor or leaving a trail for Victor to follow to a fatal confrontation.

1816年，玛丽·戈德温(Mary Godwin，后称玛丽·雪莱(Mary Shelley))开始写手稿，因为这既是她的处女作，也是她的巨著：科学怪人(Frankenstein) 。 在戈德温的小说中，一个名叫维克多·弗兰肯斯坦(Victor Frankenstein)的学生对母亲的去世感到不安，这是他对生物学的超自然理论的过分关注的动力。 大多数对科学怪人故事熟悉的人都知道，维克多(Victor)从多个人体尸体和其他残余物中再现了类人动物的雕像，并通过某种莫名其妙的科学方法使他的创作复活了。 《科学怪人》故事的最流行和现代版本在这里有所不同，但最终结果通常是相同的：复活的生物由于对其异常存在的敏锐意识而踏上了横冲直撞的境地，并留下了悲剧和死亡的念头，要么直接导致死亡。维克多(Victor)或为维克多(Victor)留下致命的冲突。

For two centuries, high school english teachers, academic scholars and horror filmmakers have urged a narrative of Victor as a casualty of his own hubris and have silently hoped that the message left a lasting impression. Unfortunately, in 2016, Elon Musk announced his own hideous progeny to the world: Neuralink.

两个世纪以来，高中英语老师，学者和恐怖电影制片人一直在敦促维克多讲述自己的自负，并默默地希望这一信息能给人留下持久的印象。 不幸的是，在2016年，埃隆·马斯克(Elon Musk)向世界宣布了自己的丑陋后代：Neuralink。

To summarize: Neuralink is a piece of conceptual neurotechology. The device itself is an implant, a “Link,” that is mounted to the brain by way of threads connected to the regions of the brain associated with movement. The active Link will supposedly allow users to control a computer or handheld device. Truly a bold and wild concept for a world where most of us still have frustrations with connecting a phone to a vehicle via Bluetooth.

总结一下：Neuralink是概念神经技术的一部分。 该设备本身就是植入物，即“链接”，通过连接到与运动相关的大脑区域的螺纹连接到大脑。 有效的链接应该允许用户控制计算机或手持设备。 对于当今世界，我们大多数人仍然对通过蓝牙将电话连接到车辆仍然感到沮丧的世界而言，这确实是一个大胆而荒诞的概念。

In truth, the concept of nerves extending into tech isn’t unusual or unorthodox in and of itself. Intuitive prosthetics, for instance, are being refined to capture the most subtle of nerve and muscle gestures to emulate naturally intended limb and digit motions on a robotic device. But in the case of this kind of tech, it’s a tool to enrich a disabled person’s life by way of an advanced accommodation. Intuitive prosthetics aim to provide equity to amputees and other persons without developed limbs.

实际上，神经延伸到技术本身的概念并不罕见或非正统。 例如，对直觉假肢进行了改进，以捕获最微妙的神经和肌肉手势，以模仿机器人设备上自然预期的肢体和手指运动。 但是对于这种技术，它是一种通过高级住宿来丰富残疾人生活的工具。 直观的假肢旨在为没有肢体发达的截肢者和其他人提供公平的待遇。

In late summer 2020, Musk and others at Neuralink Company held a live webcast where they introduced us to Gertrude, a pig currently hosting a working Link, and referenced other pigs currently hosting multiple Links (to demonstrate how multiple Links can maximize the potential of the product) or who have had removed Links (to show how impermanent a quarter-size cranial implant truly is). Among other claims to the efficacy and convenience of the Link, Musk &co. pitched how disabilities such as visual impairments, hearing loss, spinal cord injuries, memory loss and even depression could be treatable if not outright reversible. Yet Musk has also made it clear that this tech isn’t for disabled people, meaning that it’s not for people who are disabled.

2020年夏末，马斯克和Neuralink公司的其他人进行了实时网络直播，他们向我们介绍了Gertrude，这是目前拥有一个有效Link的猪，并参考了其他当前拥有多个Link的猪(以展示多个Link如何最大程度地发挥潜力)。产品)或删除了Links的人(以显示四分之一尺寸的颅骨植入物确实是多么的无常)。 关于Link的功效和便利性的其他主张包括Musk＆co。 阐述了如果不是完全可逆的，如何治疗视力障碍，听力障碍，脊髓损伤，记忆力减退甚至抑郁等残疾。 然而，马斯克还明确表示，这项技术不适用于残疾人，这意味着它不适用于残疾人。

Musk referred to the Link in the same presentation as “a FitBit for your skull,” an external drive to “store your memories as a backup and restore” them and a direct streaming device for music, none of which are targeted claims for people who have degenerative neurological conditions or major hearing loss. Based on these comments, some have already begun to suspect that the medical marvel claims from Neuralink are a thinly veiled facade for transhumanist daydreams of a fully automated cybernetic future. In that best case scenario, Neuralink will drop the pretense of medical research and exclusively appeal to the paying masses who are eager to LARP their cyberpunk fantasies. But given that Neuralink has repeatedly expressed the intent to conduct clinical trials with persons who have spinal cord injuries, we have to believe that to be true at this point.

马斯克在同一演示文稿中将链接称为“适合您的头骨的FitBit”，用于“存储您的记忆以备份和恢复”的外部驱动器以及用于音乐的直接流式传输设备，这些都不是针对那些患有退行性神经系统疾病或重度听力丧失。 基于这些评论，一些人已经开始怀疑，Neuralink提出的医学奇迹声称是全自动控制论未来超人类主义白日梦的薄薄遮盖物。 在最好的情况下，Neuralink将放弃医学研究的幌子，并完全吸引那些渴望LARP自己的网络朋克幻想的付费人群。 但是，鉴于Neuralink反复表达了对脊髓损伤患者进行临床试验的意图，因此我们必须相信这一点是正确的。

Because the Link is a device meant to eradicate disability, not to accommodate it.

因为链接是一种旨在消除残疾而不是适应残疾的设备。

Like Victor Frankenstein, Musk &co. are agitated by the distressing inconvenience of disability. Deaf people won’t be buying subscriptions for brainwave streaming services. Quadriplegics won’t be logging their neighborhood jogging routes. To that, Musk &co. say “Not yet.”

就像Victor Frankenstein，Musk＆co。 残疾带来的不便令人不安。 聋哑人不会购买脑波流媒体服务的订阅。 Quadriplegics不会记录他们附近的慢跑路线。 对此，马斯克(Musk＆co)。 说“还没有。”

More frustrating than Neuralink’s potential predatory capitalist eugenics, however, is the insistence that we disabled people should be excited for this! In an article entitled “Will Elon Musk’s Neuralink Wipe Disability Off The Face Of The Earth?” (tastelessly tagged under “Diversity & Inclusion,” to boot), there are several wink winks and nudge nudges, such as:

然而，比Neuralink潜在的掠夺性资本主义优生主义者更令人沮丧的是，坚持认为我们的残疾人应该为此感到兴奋！ 在题为“埃隆·马斯克的《神经衰弱》是否能从地球表面抹去残疾？”的文章中(在“ Diversity＆Inclusion”下无味地标记为引导)，有几个眨眼眨眼和微动微动，例如：

Disabled people are likely to have had their attention piqued by Musk reiterating that, in the first instance, Neuralink would be looking to “solve important brain and spine problems.”

马斯克重申，残疾人可能会引起他们的关注，他重申，首先，Neuralink将寻求“解决重要的大脑和脊柱问题”。

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For disabled people watching on, this may sound like a compelling narrative, or, at the very least, something fresh and innovative in comparison to the dry mathematical data and medical jargon filling the professional journals.

对于正在看的残疾人来说，这听起来像是一个引人注目的叙述，或者至少比起专业杂志上的枯燥数学数据和医学术语来说，这是新鲜而创新的东西。

But even this article concedes that “What is perhaps more tantalizing is that it is abundantly clear that Musk’s ambitions for Neuralink go well beyond just helping disabled people,” because “After all, neurological conditions such as multiple sclerosis, Parkinson’s and motor neuron disease are all so very niche.”

但是，即使是这篇文章也承认：“也许更诱人的是，很明显，马斯克对Neuralink的野心远不只是帮助残疾人。”因为“毕竟，神经系统疾病，例如多发性硬化症，帕金森氏病和运动神经元疾病，非常利基。”

In Mary Godwin’s novel, the creature gets the opportunity to voice their perspective to Victor Frankenstein. The creature explains how after being abandoned by the scientist, they struggled for a time in the wilderness, but then learned to read and speak on their own. The creature appeals to Victor to create another being as a companion and promises that they both will flee the country to seek out a new happy life for themselves. Victor nearly acquiesces until he imagines the two creatures having a life together and bearing children that would resemble their parents. The thought absolutely repulses him.

在玛丽·戈德温的小说中，该生物有机会向维克多·弗兰肯斯坦表达自己的观点。 这种生物解释了在被科学家抛弃之后，他们如何在旷野中挣扎了一段时间，然后学会了自己读书和说话。 这种生物呼吁维克多(Victor)创造另一个同伴，并承诺他们俩都将逃离这个国家，为自己寻找新的幸福生活。 维克多几乎默许了，直到他想象这两种生物在一起生活，并育有像父母一样的孩子。 这种想法绝对使他感到排斥。

The truth of the matter is that many of us disabled folk have either come to terms with our disabilities and have learned to live fully and fruitfully with them. Some of us are outright proud of them, because they are a part of how we live. These acts of self-acceptance, such as Molly Burke’s “10 Things I Love About Being Blind,” or India’s indifference to the science behind her own Treacher Collins, can be disturbing to people who are able-bodied and neurotypical and even to other disabled people who do not share the same outlook. But our voices have value, and our experiences deserve to be heard and honored.

事实的真相是，我们许多残疾人都与我们的残疾人相处融洽，并学会了与他们充分和富有成果地生活。 我们中的一些人为他们感到骄傲，因为他们是我们生活的一部分。 这些自我接纳的行为，例如莫莉·伯克(Molly Burke)的“我爱被蒙蔽的十件事”，或者印度对自己的背叛者柯林斯( Treacher Collins)背后的科学漠不关心，可能会打扰那些身体健全，神经质典型的人，甚至是其他残障人士。看法不同的人。 但是我们的声音很有价值，我们的经验值得聆听和尊重。

Neuroscientists and doctors have already countered Musk’s claims that the Link would undo the processes of neurotypical brains, such as autism. They’ve also come to the defense that these aren’t diseases to be cured. They’re facets of a whole human being. Should Neuralink become a medical device, its aim should be like the intuitive prosthetics: a means to provide equity and access to disabled people based on the needs appropriate for their disabled bodies.

神经科学家和医生已经反驳了马斯克的说法，马斯克声称“链接”将消除神经性典型大脑的过程，例如自闭症。 他们还辩称这些不是可以治愈的疾病。 他们是整个人类的一个方面。 如果Neuralink成为医疗设备，其目标应类似于直观的修复术：一种根据残障人士的需求向残障人士提供公平和获取机会的手段。

翻译自: https://medium.com/swlh/actually-we-dont-need-to-eradicate-disability-f242d925bed1