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Computers and Writing 2016 Presentation Transcript

This is the transcript from my 2016 presentation at Computers and Writing, for the panel H1: Brad Pitt Wants to Know “What’s in the Box”: How Technology, Rhetoric, and Disability Studies Play a Key Role in Breaking (open) Black Boxes. You can also watch the presentation (captioned!) on youtube, since I gave it virtually. The tags were #cwcon and #h1 for the conference and panel, respectively.

 

So. Hello everybody. My name’s Alyssa Hillary. I’m talking to you from a computer screen because I am ever so slightly graduating now. I’m an engineer at the University of Rhode Island – not a recovered engineer!

So, the idea of the black box started off in engineering and in sciences. We have a lot of processes to deal with, we have a lot of formulas to deal with, and there’s just too much for one person to know, most of the time, to know how absolutely everything works. Within a given field, we’ll say, OK, we’re not going to worry about understanding all the details of this process over here. We’re just going to say, we care what goes in, and we care what comes out. And everything else is someone else’s problem. Obviously, somebody needs to care about what happens inside that black box, but … not everybody.

Then we have the humanities getting hold of the idea, yay, cross-fertilization between disciplines, I love it when that happens. At least, formally. Informally, I figure the humanities since, oh, forever.

But here’s the question: What do different people, different fields, different disciplines, different interdisciplinary combinations, black box? That depends on where we stand, where we sit, where we retreat to when it’s time to curl up in a ball and shake.

As an engineer and as a disability studies person, I see quite a bit of it going on. Technology. Now at computers and writing, we’re going to be better about not black-boxing everything technology ever than a lot of people will, computers is right in the name.

But, a lot of the time, engineers and scientists and technology people tend to black box, tend to ignore what are the cultural forces behind our technology, how our technologies are going to get used. We don’t think about why our technologies are going to get used the way they are. We just think about, here’s how it’s getting used, we’re not going to worry. At one extreme, I’ve seen people talking about how to do the death penalty as purely an engineering problem. This is something that is currently happening, how do we do it more efficiently, not thinking about the societal factors behind why are we even doing this? Less extreme, still pretty common.

In the humanities, we often treat technological developments, or we have often treated technological developments, as something that happens and the technologies appear from just about nowhere. So they’re treating the engineering process as a bit of a black box. Time goes in, technology comes out. Or, for mathematicians, coffee goes in, theorems come out.

Now, in the digital age, and just in general over time the amount of technology we have to deal with increases. So what do we treat as a black box, why do we do it? Digital humanities, we use a lot of software. We use the Internet. How does the Internet work? It’s a bit of a hodge-podge, we’ve got websites here, websites there, different protocols, http, https, fttp, and on and on, and I don’t think anybody knows how all of it works. And this is what we’re working with. How much do we treat as a black box and how much do we try to understand?

We’ve got statistical analysis of online texts. If we don’t understand what our statistical analysis program is doing, how do we know if it’s any good? How do we evaluate it with no idea what’s in the box? But, how much time do we have to figure out what’s in the box? Who are we trusting, and how hard would it be to take the time and energy not to trust them?

Some of our software? Maybe we don’t try and get into the nitty-gritty of how our web browser works, maybe we don’t try and figure out why Google’s giving us the results it gives us – that’s a hugs black box, it’s proprietary, good luck figuring out exactly how it works, though search engine optimization is a thing, they’re trying to open the box, they do a pretty good job.

And there’s our technology. Now, when we’re interdisciplinary, or when we’re trying to be interdisciplinary, generally we’ve got a few “home” disciplines. Not as in, there’s a few specific disciplines where we get interdisciplinary, I think everyone has the potential to try at least. But you, in particular, me, in particular. I am an engineer. No matter what I’m approaching, I’m still thinking, to some extent, like a mathematician, like an engineer, like a disabled person. I bring those with me, and what things I’m likely to treat as a black box in my other work relates to my initial upbringing as mathematician, engineer, disability studies person.

We’re less likely to black box the stuff we think we can understand! So the more it relates to one of our home disciplines, the less likely we are to black box it. And we’re more likely to black box what we don’t understand! As an engineer, I’m more likely to try to get into the nitty-gritty of technology than someone who’s original training was in literature. It’s just a fact. But if we’re trying to be interdisciplinary, if we’re trying to combine multiple things, maybe we want to get into the nitty-gritty of stuff that normally, we wouldn’t. How?

I don’t actually know how. I know that working with people across atypical combinations of disciplines is one way you could potentially do it. Maybe I don’t know how to understand every piece of literary analysis, I know that I don’t, but I’m working with someone who does, and they can unpack that black box.

Maybe Sam, also on this panel, can unpack the black box of how do we get from one piece of rhetoric to the next, constructing spaces of advocacy and asking, who is this organization even advocating for? And then, he’s unpacked that so I can understand it. I come back and say, now as an engineer I understand the technologies. I’m going to get into the question of how do we go from our current rhetorical position to the technologies it makes sense to try to build given that rhetorical position, given our current sociological, cultural background. How does this lead to given technologies and how do we use those technologies. I’m an engineer, I’ll unpack that part.

Which gets me into technology, people with disabilities, and how we get technology that’s useable by people with disabilities. Again, I’m an engineer. I’m going to hit the questions that are relevant to engineers. What’s in the box? So.

Who is this really for? Often times, when we’re designing technology that, at least in name, if for people with disabilities, is for disabled people, asssitive tech. Who’s getting asked what the needs are? It’s parents, it’s professionals, it’s teachers. It’s not the end users, disabled people, who will go home and use this technology regularly. So, my communication application, that I use fairly regularly, I have Proloquo4Text on my iPad. They’re actually pretty good at getting feedback from disabled people who use their application. A lot of others … aren’t.

You get people advertising technology for communication supports based on testimony from parents, professionals, teachers, but not the people who are using these applications, the people for whom these applications are our primary voices.

So who get’s asked what the needs are? Who’s designing our technology? That’s another black box that I’m situated to unpack. See, I know of a group that’s trying to design technology to track environmental factors related to meltdowns for autistic people and I am the, as far as they know, the first autistic person that they’ve met. So who’s designing this, and who are they talking to, if, prior to me, they aren’t talking to any autistic people? In practice, who is, the end user? I don’t know. It clearly isn’t us.

Where do we stand? Where do we sit? What’s a black box, and to whom? I tried to build communication software, very, very naively, definitely not working with the best tools, despite being an engineer I am not a computer scientist. Trying to treat some communication problems for autistic people, for neurodivergent people in general, as a problem of translation. My friends who know me better can understand me more than strangers can. Because they know from experience what context I’m trying to put in, they know how my syntax changes under stress. They know how my communication tends to differ from standard, white, abled, middle-upper class, neurotypical, cis-het, every other kind of normative speech there is. And they can translate from what I’m saying to what they should understand. And they can do this for other people who don’t know me as well.

Can we apply machine translation or computer assisted translation to help us do this? In that position I had to get into the nitty-gritty of how does computer assisted translation work. I had to learn enough about how it worked to start unpacking that black box, in a way that, if I were just trying to translate between two “standard” languages, I wouldn’t need to unpack it, because I’m using the software out of the box, as it stands.

It’s about what our position is, in the world, what we’re trying to do, what we’re trying to understand. That tells us what black boxes we need to open up and ask, what’s in this box, and which ones we can leave alone and say, y’know, someone else can open that one.

Thank you everybody.

Autism and Neurodiversity Presentation for The Five Project

Below is the transcript for the presentation I gave via video in November 2014 and again in January 2016. It is also available here, for those who want to share a link not blocked in China. Thanks to Helen McCabe and Vivien Yiu for arranging the presentation, and to Vivien again for helping translate the script I wrote in a mix of English and Chinese. You can watch the presentation video on Youtube here.

此稿内容来自Alyssa Hillary(叶莉莎,自闭症的研究生)于201612号主讲的自闭症讲座。此次在线讲座主办人为饶炜莹(宾夕法尼亚大学儿童发展心理学在读硕士研究生)和五项目的Helen博士。讲座共举办了两次(201411月与20161月),由饶炜莹发起,邀请叶莉莎为主讲人 。原创版权所有叶莉莎,转载请标明出处。

大家好,我叫叶莉莎,我会介绍的内容就是自闭症(和神经多样性理论)。过去的几十年中,不仅越来越多的自闭症者被诊断,也有越来越多家庭知道(他们的孩子有自闭症)。最近,由于更多人注意自闭症,学习自闭症,对自闭症推广,所以有越来越多人以为自己知道自闭症到底是什么。

现在,大部分人都觉得自闭症只是一种病态,并且需要接受治疗的。我跟我的辅导老师,王老师,(第一次)见面(的时候),那时候我不能说话。朱老师,我们的学术主任,对辅导老师解释一下:“叶莉莎有时候不能说话,她会用一种特殊的方式交流—打字。”但朱老师没有说我有时候需要打字的根本原因。我快快对王老师打“特殊?因为自闭症而甚至面对面的时候可能打字可能有一点特殊,但是在现代社会中所有的人都会打字!”我的辅导老师问我:“你从自闭症走出来了吗?”那。。。我不能说话的时候,我的自闭症比较容易看到 (比较明显),但是他还这样(问我)

所以,通过这个小故事我想表达四个观点。首先,一个自闭症学生不能说话并不代表他学习不了普通课程。实际上,比起特殊教育的课程,普通课程对我来说简单得多。如果人们认为我只有坐定了,停止动来动去,目光注视老师,并能够不断地用语言说出我的需求的条件下我才能学习,但那样。。。我就会一直浪费时间和精力去控制这些行为,还没有开始学习普通课程。换句话说,我也不会成为一名大学生。(我能成为大学生)就是因为我主要学习的并不是控制行为,而是学到新的能力

第二,我的学术主任朱老师选择不告诉辅导老师我有自闭症是有道理的选择。因为她知道人们对自闭症有很多的误解,所以她自己没有告诉辅导老师我有自闭症。但是。。。她觉得选择告诉不告诉老师,什么时候告诉老师,怎么告诉我的辅导老师都应该是我的选择。

第三,我自己选择告诉辅导老师我有自闭症也是有原因的。我之所以直接告诉王老师我是自闭症者,是因为我知道:消除关于自闭症的误解最有效地方法就是告诉别人:“我有自闭症。我的生活真的是这样子的。”通过认识自闭症者,人们会理解自闭症到底是什么样子的。而且,如果我(不告诉别人)我需要的帮助到底是什么,(我)难以得到我需要的支持和帮助。

第四,把我的需求,把所有残疾人的需求称为“特殊需求”不一定正确。很多时候,把我们的需求称为“特殊的”给别人带来了借口不去满足我们的需求。(这)也不是正确的。所以我不说我是一个有特殊需求的人,我也从来都不说我的需求是特殊的。我不会说我是病人或者患者。而且,我不会说我自己的残疾全部都是由于我的能力或者缺陷。我的残疾是由于我的能力和社会所期待和要求的能力(有)冲突。社会认为我应该有这种能力,但是我并没有。这个问题由两部分(构成):是社会和我之间有冲突。而并不是自闭症者有所有的问题,社会一些问题都没有。我不会说我遭受着自闭症,但我经常会说我遭受着对残疾人歧视或偏见。

我不能经常通过口语交流这个事实本身并没有让我很难过,但人们对我我用口语交流的期望就会让我难过,会让我很受伤。人们经常因为我不用嘴巴说话,而认为我不懂他们说什么,或者觉得我很固执没话说。如果一个自闭症者从来没有说话,人们以为没有说话就等于不明白或者没有话想说,(这)对从来(不)说话的自闭症者更有威胁,更能带来更大的伤害。

不管我们是否能够用语言来表达,是否能够说话,人们对自闭症者能力的认知似乎经常属于非黑即白:他们认为如果一个自闭症者能够说话,可以坐定,就会有良好的生活。他肯定是“高功能”的。而如果一个自闭症者不能说话,就是不能坐定,肯定有。。。不能有好的生活等等。在这样的思想中,被称为高功能的自闭症者(接收不到)他们需要的帮助,被称低功能的自闭症者没有人承认他们也有自己的能力。在这个问题中,也可以看到,如果一个人被称为够高功能,人们会以为我们就没有自闭症。

当我们生活过得很好的时候,人们非常容易这样认为,说,哦,你的生活很好,所以你肯定不再有自闭症。即使(我们)非常明显还有自闭症,(人们)还会这样认为。我第一天见到王老师(的时候就)面临(了)这样的情况。

事实上,“从自闭症走出来,” “治理自闭症”等概念都是无意义的概念。如果一个人小时候有自闭症,长大后他肯定还有自闭症。我们可以学习一些方式来让我们生活更好。人们在教我们“社交技巧”的同时也是一种误解,那就是这些“社交技巧”可以让我们的自闭症特点变少而且降低我们所面对的歧视。但是实际上教没有自闭症的同学,教神经典型的同学如何更好地对待残疾学生才能减少残疾学生面临的歧视。我们假装成为的神经典型的人跟真的是神经典型的人非常不一样。我们永远是自闭症者,就像一只小猫长大后不可能成为一只狗一样,我们长大后(会)变成自闭症成年人,不(会)变成没有自闭症的成年人。我们会和五岁的自闭症小朋友很不一样,就像神经典型的成年人和神经典型五岁小朋友也很不一样。但是这样的改变并不代表我们的自闭症减轻了。

讲到这里很多人都会想“对你来说很顺利,但我的小孩需要不同的东西”,或者“我的小孩永远不可能成为那样。”对于前一点,我不否认人们有不同的需求。我想。。。我想强调的是我们应该支持和满足那些需求,但是不该暗示有这些需求是不对的,不能认为有这些需求的人比别人差。那,对于“我的小孩永远不可能成为我那样”这种想法,其实我们并不知道。我们怎么去预测没有自闭症的三岁,四岁,五岁的小孩以后能做什么呢?这是不合理的。为什么专业人士经常尝试预测一个自闭症小孩的未来呢?这种预测的行为对于自闭症小孩来说更加不合适。

你(可以确定的)不是你孩子长大后到底会还需要哪些支持,还需要哪些帮助。但是,你们现在能确定的就是你的自闭症小孩长大后还是会有自闭症,而且你现在无法去预测他以后会需要什么样的帮助。主意好(需要注意的是),你们的孩子长大后肯定还有自闭症,也不一定能够假装神经典型的人,也不一定愿意把所有的能力花在控制自闭症的特点上。(你们)必须在自闭症中支持孩子的能力。

那我们该如何支持自闭症者呢?现在给自闭症者的教育和治疗都是冲着一个目的的:那就是希望自闭症者会改变成和一般人一样。难以知道真的支持自闭症者是什么样子的(人们有时不知道该如何正确支持自闭症者)。

我知道,开始走一条未知的道路(很难),但是我们现在正在实施的这几条路也并不会带来令人满意的结果。如果人们(把)自闭症者往一般人方向引(导)的话, 这样很有可能有两种结果, 要么我努力努力试图看向一般人一样而又成功,(但就算如此)我们的成功(会导致)别人忽略我们的努力。如果不是这样子的,大概是因为我们永远无法找到看向一般人的方式。在这样情况下,别人已经忽略的就是我们有的能力。

不管你们多么希望我们可以变得像神经典型的人一样并从此过上幸福美满的生活,在现实中并没有这样的可能性。我愿意说,无论你等多久,一直(不会有)这样的可能性。因此就需要(用)正确的方式去支持自闭症者,(去)教会我们真正需要的技能。我不会告诉你你的孩子会需要什么样的支持,但是我会告诉你我的故事:

不管我走到哪里我都需要带我自己的笔记本电脑。这不是因为我想随时可以玩电子游戏,而是因为我有时候不能说话。即使我不能说话的时候, 我还能够打字。即使在我能够说话的时候,我也可能需要付出很多精力来说话。因此,(虽然有时候)我能够说话,但(打字对我来说更好)。正因如此,我在笔记本电脑里安装了一个语音软件。在我需要表达想法但是不能说出话的时候,我可以通过打字来让语音软件读出来我的想法。这样,无论我能否把我要表达的想法说出来,我(都)还能表达我的想法。

如果人们希望我和一般人一样,我就不会这样(携)带我的笔记本电脑了,不会使用我的笔记本电脑说话。如果那样的话,我只能在说不出话的时候选择不说话,无法表达自己的想法。无论这些想法重要不重要,我(都)无法表达。过去的二十年我都是这样选择不说(话),而这并没有提升我的语言表达能力。但是,当我开始尝试用打字来与人沟通之后,我发现自己能用语言来表达更多的思想了。我一般说话的能力让很多人(更加)以为我不说话的时候就是因为我不想交流或者没有话想说。正因如此,我在过去的二十年中错过了很多与人交流的机会。

现在,我不再尝试让我的肢体语言看上去和神经典型的人一样了。我的面部表情比起我的感受通常显示得平淡一些,但是你能通过我的肢体语言读出我的心情。当我坐在椅子上前后摇晃身体的时候,这通常表示我正在尝试克服一些困难:可能我感觉超负荷,可能我感觉太累了,也可能是我身体不舒服。如果我盘腿坐在地上,没有摇晃身体,这通常说明我感觉不错。但是如果我在地上而且前后摇晃,这代表着我已经放弃在困难中继续做事,此时我正努力克制着不要开始哭。

每个自闭症者的肢体语言都代表着不一样的意思,上述例子只能代表我自己。随着经验的积累,你们能够学会并读懂不同自闭症者的肢体语言,但很重要的一点是:我们有不一样的肢体语言。尝试着不表达我们独特的肢体语言会浪费我们的精力。而这些精力本可以花在更有意义的事情上。有些专业人士说自闭症儿童只有坐定了,看着老师,不摇晃,不甩手的状态下才能开始学习。但是这样控制我们的行为帮助不了我们学习,而是浪费我们应该(用)来学习的精力。如果我真的把时间和精力浪费在控制自己的自闭症的行为上,那我就很难再有精力来读研究生了。

另一方面是我的生活中得无序的问题。我的桌子,初中和高中时的储物柜,以及我的房间都很乱。因为我已经意识到我自己无法保持有序整洁的空间,所以我的朋友会帮助我整理。但是,当我还是个孩子的时候,人们常常试图着教导我整理自己的东西 。我想这是因为他们认为是否保持整洁取决于我付出的努力,而和我的能力无关。因为我的学习一直很好,人们就开始认为我在其他方面也一定很聪明。而在整理自己东西的方面,并不是这样子的。在我读初三的时候,我已经跳级了一次,开始读第二年的代数数学课。(当时我)也在考虑再跳一级,修初级微积分课。在第二年代数课的第一天,老师说她有时候会查我们的笔记本。说如果一个人的笔记本太乱了,她也会抽查一本本子。因为我已经知道我的笔记本一直(过于)乱了,所以我就在想:就是我的笔记本。她(会)抽查的笔记本就(会)是我的(笔记本)。因此我决定,无论我在学习(能力)方面应不应该再跳一级数学课,我肯定需要再跳一级(以免被老师抽查)。高三的时候我才跟代数老师说明我(当时)担心她会抽查我的笔记本。她说这是不可能的。只(有)最糟糕的学生他们的笔记本到达一定的乱度她才会抽查。她本来不明白,最后(也)不相信的是,她描述的乱度不如我笔记本真正的乱度。

很多时候,当我表示出很明显的应对机制的时候,人们会认为这是我需要帮助的时候。举个例子,我有一次去爬长城,因为我恐高,我在下万里长城的时候会坐下来,然后一步一步地挪动身体,滑下台阶。人们看到了就会认为我需要帮助。但事实是当时我正在用应对机制来克服困难,并不需要外界的帮助。相反地,此时我更需要的是人们给我提供空间让我用自己的方法来解决问题。当然我的解决困难的方式可能和其他人不同。比如我喜欢上课的时候坐在地上,或者那一次我一步一步滑下了长城。

但是,当我真正需要帮助的时候,我通常说不出来,而不是主动请求帮助我,这是因为我的沟通障碍令我难以请求帮忙。除了这个问题以外,别人对我请求帮忙的反应通常让我的沟通问题变得更加严重。比如当我请求老师解释一个作业问题的时候,我并不希望他告诉我“想怎么做就怎么做”,而是想明白我怎么做才能满足要求,或者我需要交什么样的作业。也就是说,当我需要知道具体要求时,给我更多选择不能帮助我。我想说明的是,当一个人清楚他需要什么样的帮助,并且向你请求帮助时,不要认为你比他更清楚他需要什么样的帮助。同样的,甚至有人在不清楚他们需要什么样的帮助的情况下,如果他们说你提出的方式不能解决他们的问题,也许要相信他们。

我记得有一次我和我的辅导员去看电影X战警。我们走出电影院时,外面在下雨。 我的辅导员带了伞。尽管他一直尝试着走得离我近一些帮我遮雨,但我一直走开因为我不喜欢和别人同用一把伞。我的辅导员说:“莉莎,回来!你会淋湿!”我没回去,我和他说:“我不用雨伞!”他又说了一遍我会淋湿。最后我只能说:“你看!我走路的时候,我的手会这样动,有人在旁边离我太近就是麻烦。我不想你为了帮助我而做了麻烦我的事!”我的语法可能有错误,而且我可能过于直接,但是我的辅导老师明白了我的意思。

讲到直接和委婉的话题,人们一般说中国人委婉而美国人直接。作为一个美国自闭症者,我不赞同。我觉得美国人委婉,中国人更委婉。

有一次我的朋友来我的大学,罗德岛大学,探望他的另一位朋友。我的朋友问我是否想和他们一起吃中饭。因为我当天下午有一个会议,而且我还没有准备好会议,所以我告诉他:我觉得我去不了,因为我还需要回去为会议作准备。

后来,我的会议安排被取消了,所以我告诉我的朋友:没有会议了。 但是他之前将“我不能去因为我有会议”理解成了“我不想去”所以他既惊喜又困惑。当我们吃饭时,他问我:“你不是说你不想来吗?”我回答我从来没这么说过,但正因为美国人有时候太委婉了,他就以为我有这个意思。

当我这样说他马上就意识到问题所在了。我直接说出了我的想法,而我没有考虑到神经典型的人对这句话会如何理解。而且我的朋友假设我和一般人一样,在这句话的背后隐藏了另外一个意思。我觉得类似的事件经常发生在我身上,而且我在中国的那一年发生得更加频繁。除非人们直接问我我的话背后的意思,或者我自己意识到我说的话可能有双重意思,否则我很难意识到我的话可能造成的误会。

我发现这些误会的产生和误会引起的问题在美国更加严重。我不觉得这说明了美国人比中国人更委婉。我觉得如果是这样的话文化专家应该早就会意识到。我反而觉得,当我在中国过于直接,或者没读懂别人的意思的时候,人们会觉得这是因为我是美国人,他们会觉得这种误会是因为文化差异而产生的。但是如果人们认为是我的自闭症导致我过于直接或者误解了他们,他们就会觉得这是100%我的错误。

不是只有不同民族才有文化区别,才值得使用跨文化交际方式来交流。残疾人有残疾人文化,残疾人文化群体与主流非残疾人文化群体的跨文化交际也有人研究过。自闭症者文化也存在;在自闭症者自己组织的活动中,更多人会对活动的具体安排提问。当一个人在参加活动的时候表现得孤僻,第一次讯问他有没有事是可以被接受的,但是如果不断地想让他参与到对话中来,就是一个鲁莽的举动。在一个社交场合中,神经典型人都能接受在没有讯问别人意见的情况下(进行)肢体接触,但是自闭症者通常都会问。比如甚至握手前,自闭症者会问,可以吗?

一般来说我们也更愿意接受不同的沟通方式,比如打字、选图片、和打手语。自闭症文化更注重直接的表达,自闭症者通常愿意把要求介绍得更加具体,少用比喻,或者解释已经用过的比喻。我们知道我们不能依赖肢体语言去理解一个人的心情,特别是在我们不了解这个人的情况下,因此我们更加愿意去相信一个人说的话而不是他们的肢体语言。

另外,我们知道“我现在不想跟你说话”不一定代表“我不喜欢你”的意思。对很多自闭症者来说,交流需要花很多精力,说话需要花更多精力,有时候我们只是单纯地不想跟别人交流。在很多自闭症者组织的活动中,我们会佩戴一个标牌,上面会写我们是否能够,并且是否愿意和别人交流。

从上面的话可以看到,自闭症文化和主流文化有很多不同。神经典型者和自闭症者接触时,应该意识到并尊重两种文化之间的不同。如果人们能把自闭症当成一种残疾的同时,也能把自闭症文化看成一种文化,这可以带来很多新的见解。

如果你把自闭症看成一种文化之后,你就会懂为什么自闭症小朋友需要接触自闭症成人。你就会理解自闭症者需要和其他自闭症者有接触的机会。我们也需要机会参加我们自己办的活动。包括美国的Autscape这样的组织,也包括在线的活动,比如自闭症者谈话日等。有些自闭症者也出了自己的书。中国的自闭症者也肯定有这样的能力,也一样可以成为艺术家,作家,和创作家。如果想知道他们在创造什么样的文化,就应该问他们。

我们要意识到让一个自闭症者“康复”而且脱离自闭症是不可能的。我们还要意识到自闭症者有需求的同时我们也有自己的文化。我们真的需要达成这样的共识。 很多时候自闭症者为了得到资源而要填很多书面文件,这些书面文件对他们来说也很有可能是一种认知障碍,但是很多人认定了父母会帮他们的自闭症小孩处理这些书面文件,所以忽略这样的认知障碍。 但和大多数人一样,自闭症者也有成年的一天,所以后来我们需要学会自己争取自己所需要得资源。如果人们认为自闭症者永远不会长大,他们反而给自闭症成年人的生活带来了更多的障碍。人们在把自闭症小孩子正常化失败后,就把我们的需求忽略,加上更多障碍。而事实上,我们还在。

我们是自闭症者,我们存在着。我们永远都不可能变得“正常”或者神经典型的,但如果人们不再期待着我们和神经典型人一样,自闭症者能够做的事情足以让你们惊讶。

此稿内容来自Alyssa Hillary(叶莉莎,自闭症的研究生)于201612号主讲的自闭症讲座。此次在线讲座主办人为饶炜莹(宾夕法尼亚大学儿童发展心理学在读硕士研究生)和五项目的Helen博士。讲座共举办了两次(201411月与20161月),由饶炜莹发起,邀请叶莉莎为主讲人 。原创版权所有叶莉莎,转载请标明出处。

Computers and Writing 2015 Presentation Transcript

This is the transcript from my 2015 presentation at Computers and Writing:

Oh, yeah. Thank you. Slideshow. From beginning. Awesomeness.

Okay, that’s close enough to the color I was aiming for.

[LAUGHTER]

So, you might notice that the language on my slideshow is fairly basic, “Actually including more people using the internet—writing calls so the invited contributors can understand.” That’s because, part of what I’m talking about is trying to include more people, including people whose disabilities are cognitive, whose disabilities affect language use in some way—I’m part of this group.

Sometimes that inclusion can go wrong. We’ve got one case, the Feminist Wire’s forum on disability about two years ago—I was pretty heavily involved in this one, in running into the access barriers, in trying to change them, and in having mixed levels of success changing them.

One of the first things that we saw was “Disability seems to be trending in academia these days.” While that might be true, talking about the fact that it’s trending as part of why you want to talk about it is not really a good way to make the people who’ve been working in the area before it was cool like you and want to contribute. It’s a good way to really piss off the people who live this reality every day. So, that’s problem the first.

Problem the second. The call for submissions—and this is pretty typical of everything that’s academic or academic-ish, not just the Feminist Wire— it had lots and lots of jargon. We run into this problem as academics when we’re reading something from even an adjacent but slightly different discipline. The difference between academia and activism is just as big, if not bigger. The difference between academia and people who have language difficulties can be even wider depending on exactly what our language disabilities are. (Even for those of us who have language disabilities and are academics!)

They say, straight up, that they are asking for disabled people, activists, and writers to contribute, which is great. But when the call for submissions is written such that people with disabilities mostly can’t understand it, that kind of makes them liars. It’s not a nice way of putting it, but it’s accurate.

One disabled activist, Kassiane Sibley—she’s autistic, epileptic, blogs at Radical Neurodivergence Speaking—her statement, “Cognitive inaccessibility—” meaning, writing so that people can’t understand it “—is bad because it’s hard for disabled people to understand, it’s hard for people who couldn’t afford a fancy education—” like most of us here have had, “—to understand. A lot of disabled people, people of color, disabled people of color can’t afford said education, and these problems are part of why disability studies, and why academia in general, is so white and so upper-middle class.” No one else can understand what we’re talking about.

So, we talked to the Feminist Wire. They responded. “Given the sustained exclusion and economic vulnerability of those with disabilities, the academic language of our call was pointed to as yet another method of exclusion. Reduced access to formal higher education works to perpetuate a cycle of ableism.”

What they’re saying is actually a lot like what I just said, but this is still kind of jargon-filled. And when we were talking about cognitive disability, language disability as one of the big main issues, they’re talking about it just as access to higher education.

Since cognitive disabilities—any disability other than physical/mobility/sensory has a tendency to get erased when talking about disability, this is actually a big issue.

When they edited their call for submissions initially, there weren’t really any changes made to the body. We just got five more paragraphs of jargon at the front about why it’s important to revise. That actually makes it harder for us to understand what the call for submissions is, so the first attempt at remedying it actually made it worse.

Then they get asked, because we say, “Hey, it’s still inaccessible.” What do we do? Well, they appreciate our feedback; they appreciate our comments, but they’re not rewriting it again. They didn’t rewrite it the first time, really, but they’re not editing it again. They’re not making another version either.

They invite us to share our own interpretations. This requires that we’re able to make heads or tails of the call. In general, when you’re being asked about access from a disabled person, and you then say, “Why don’t you do it yourself?” you’re asking the person you just excluded to fix the problem you created. That’s victim blaming and it’s not going to work. We’re not going to solve the problem that way.

This is, in fact, doubling down on the barriers, making it harder to get in. Why is academia so able, white, upper-middle class? Because if you can’t get in because of the barriers that they’ve put up, you’re expected to fix it yourself.

So then there’s the question, “Why do those of us who are already here care?” Clearly people with disabilities care. That’s why we’re trying to fix it. But why do the people who are inside care? For one thing, related to philosophy of science and production of knowledge, Helen Longino notes that excluding people from conducting research based on them being part of given social group is actually a cognitive failing in the researchers. It makes research not be as good.

Daniel Hutto, talking about folk psychology, notes that the best explanations for why someone acted the way they did usually comes from the person who just acted1. That is, we’re going to get a better idea of what’s going on in the lives of people with disabilities if we ask them, if we listen to them, if we write our calls of asking people to talk about the issue so that people with disabilities can actually understand what’s going on.

Right now, we’ve got an issue where people who are speaking, effectively, different languages or different dialects, even if they’re still part of the same language officially—things like academic-ese, academic-ese, the words that your plumber knows to describe what he’s doing as they’re fixing your pipes—these are both considered part of English, but they’re different. And going from understanding from one to the other requires, effectively, translation.

The burden of conducting these translations—of crossing these cultural and linguistic divides—tends to go on the person whose version of language is considered less than. Post-modern academics are fairly high up on the totem pole. Disabled activists are fairly low. Therefore, it’s our problem, except it can’t and shouldn’t be our problem, at least not just our problem. That’s part of how we get into trouble.

So. Why is it hard to fix? Well, this involves changing the entire of culture of academia. That’s no small order. Like most cultures, there’s a good bit of investment in keeping things the way things are.

So, many of us remain unsure of how to practically create accessible texts. We don’t know how to write understandably, never mind disrupt pedagogical infrastructures or cultivate radically inclusive conferences, whatever that means when we translate out of academic-ese. We also don’t know how to change the structure of teaching. We don’t know how to make conferences that actually include people with disabilities and other typically excluded groups, as speakers, or even sometimes as attendees. That’s from Melanie over there, our moderator. She talked about this in the call for submissions for Cripping the Computer, where I’m writing about this problem at much greater length.

And, there’s stereotypes. When we think of people with disabilities or any other minority group as being disconnected, it can discourage content producer, or people calling for submissions, from reaching out to members of these groups to ask for contributions. We get a bit of a vicious cycle there.

And then, of course, within academia, we tend to want to position ourselves as experts, and in many cases, we really are. But nobody’s an expert at everything. When we don’t know something, it’s hard for us to ask for help. And that means that, when we don’t know how to do it, we’re probably going to continue not knowing. We may even try to push it off as something that isn’t important—that doesn’t matter.

Now how do we fix this? There’s writing in plain language or plainer language. This involves knowing what plainer language even means. The thing about language is that, once you’re used to a bunch of words—once you’re used to a certain way of writing or speaking—it looks natural to you; it feels natural. We can get used to writing in a given way. We may not realize all of the terms that we use that actually are jargon. When this happens, well, knowing what plainer language even is or how to write in it becomes tricky for academics.

We could use activist language. Most of the disabled people who aren’t part of academia who are trying to contribute probably have some familiarity with activist groups and the ways that activists talk about things. This requires that the people who write in the calls are familiar with the terms that activists use.

Sometimes those are the same as what academics use; sometimes they aren’t. Sometimes we’ve got words that academics don’t have; sometimes they’ve got words we don’t have; sometimes both.

We’ve got versioning. We’re concerned about here, do we have somebody who can actually write in more than one of these dialects? This has been done to good effect. In a call for submissions for Accessing the Future fiction, they had a plain language version and a version that was more academic. There’s another conference, currently open call for submissions in the UK, where they have an academic call and an activist call because of these differences. What you need is someone who can translate for you. This might be multiple people. You might need multiple translators if there’s more than one version.

Between different disciplines, you’ll have different kinds of jargon. And of course, there remains the issue of, what happens if one of these versions—perhaps an inaccessible one—becomes the default version, and the plainer language version that’s easier for people with disabilities to understand is thought of as secondary.

This has happened, and it does mean that people with disabilities, or people who need a plainer language version for any reason, don’t necessarily see it. They might only ever find out about the inaccessible version, because sometimes, even though both versions exist, the more accessible version links back to the original main, default, hard to read one, but not the other way around. Then we’re stuck.

There’s also the possibility that we, as academics, can ask for help. We can recognize these other ways of knowing as real, as important, as useful, lived experiences, other formats. This is, perhaps, the biggest cultural change of all, which means it’s probably the one that’s hardest to affect, but it’s important because, when academics continue trying to read, write, talk about any given minority group without looking to members of those groups for help on making it so that we can join the conversations about ourselves—when they expect that academics talking about any given issue are either not part of the group we’re talking about, or are expected to distance ourselves from our lived experiences as members of that group—this is making our research less good.

We should recognize these other ways of knowing as real. We should be able to ask for help. I don’t know how much we’re there yet. These are kind of the ways that we can work on trying to fix this problem. It’s going to take time. It’s going to take concerted effort by a lot of people working to change how we ourselves act, not just pointing out how other people act. That’s why I put simpler words, mostly, on my time—on this. That’s why I’m recording. I’m putting this up for people who can’t be here today for any reasons.

1His book, Folk Psychological Narratives, does propose some alternative ideas to inherent theory of mind stuff. However, his application of his basic ideas to autism is … not good. If you want to apply his broader ideas to autism specifically, do it yourself while listening to what autistic adults have to say about our own experiences and reasons for acting (like his broader ideas would totally suggest you should.)