Disability Studies/Rights for Engineering Students

That's a thing I'm creating a syllabus for. It's going into a special issue of Disability Studies Quarterly! (Yay, I'm doing things!)

I know a bunch of things I think need to be in there (social model of disability, all technology is assistive technology, universal/inclusive design, disabled people involved in designing own things, how not to be terrible to disabled colleagues, etc.)

But!

I am one person. A person in most of the right fields for this (education experience, engineering student, disability studies person,) but still one person. My perspectives are absolutely affected by which kind of engineering I do (I'm a mechanical engineering student with some interest in nanotechnology and some in assistive technology and a lot in computers) and the ways I am disabled!

So, I want to know what you think should get covered. That can be things you think a class introducing disability to engineering students should read, topics you think should be discussed, activities you think should/shouldn't be done, whatever opinions you have on creating a class like that are welcome.

I asked about this on Quora, too, if you'd rather answer there, and you can email me at alyhillary@gmail.com if you want to talk that way.

Bisexuality Day

Around the internet I've seen a few different terms: Bisexuality Awareness Day, Bisexuality Visibility Day, Celebrate Bisexuality Day, and probably more that I didn't notice because I am not everywhere.

Whichever. Bisexuality and Today. Also Twitter. There's a hashtag, #MyBisexualityIs, that I'm fairly sure was created by @FeministaJones, and that's embedded below.

It's Celebrate Bisexuality Day!!! I'm hoping people can share their thoughts, feelings, experiences being bi/pan using #MyBisexualityIs
— #NotAllBlkFeminists (@FeministaJones) September 23, 2014

I tweeted a couple things to the hashtag too, which I'm embedding and writing more about. Twitter/Blogger combo is great for that, because I say something short on Twitter, then bring it over here to be more lengthly and get to say more things about the things and get kind of meta.

#MyBisexualityIs actually biromantic asexuality. I'm still Bi.
— Alyssa (@yes_thattoo) September 23, 2014

This was my first post to the tag of the day. It's about inclusiveness for those of us who are also asexual. I've written a bit before about the fact that I'm asexual, it's a thing. Sometimes, people think asexual=straight, and therefore not queer. That's... not necessarily the case. There's a lot of different kinds of attraction, sexual is only one of them. It's one that I don't experience, meaning I'm asexual, but any of the other kinds? Not inherently covered by asexuality. Gender identity? Not part of asexuality either.

And as for me. I am bi. There's enough different, overlapping, sometimes contradictory definitions of being bi or pan that I'm not 100% sure which fits me "better" but I can make a case for either or both. The fact that I am also asexual does not change this.

#MyBisexualityIs not a sign of autism making me confused about gender.
— Alyssa (@yes_thattoo) September 23, 2014

And here is my other tweet. No, no one has ever said that to me when I told them I was bi. It has, however, been said to other autistic people when they state their bisexuality. It's essentially a combination of the idea that bisexuals are "just confused" (false, FYI) and the idea that autistic people are somehow impaired in our understanding of our likes and dislikes (also false), so far as I can tell. We do tend to have some relationship difficulties because any kind of mismatch within any kind of relationship can cause those, but this is a different statement from inherent confusion about gender.

There's also the whole bit where even if we are confused about gender, if that confusion did somehow cause bisexuality, it would... still be bisexuality? (not going to lie, gender stuff does kind of confuse me: not in a "don't understand other people's genders" way or a "don't understand which genders I should be attracted to" way (all of them, clearly), but in a "um there is nothing in my head that looks like gender to me????" kind of way.) Bi because not entirely sure how gender works is still bi, even if it's not how my bisexuality is.

Not so much explained on Twitter because 1) 140 characters isn't much, and 2) My bi(romantic a)sexuality is not a sign of autism making me confused about gender, and the hashtag is MyBisexualityIs. 

Acceptance Vs. Recovery

So this was actually a bit back, but I've been thinking on and off about my exact intended wording. I've also just been really busy. Taking five classes, teaching one, assisting three others, playing sports, and working on a paper for INSPIRe Student Symposium has that effect.

Anyways.

Think Inclusive wrote an article. This is a thing they do pretty often. This particular one started off by showcasing a poet, which is cool, and then mentioned that he had also been interviewed by a site called Autism Live, which includes language about "recovery." That struck an uncomfortable note with the author over at Think Inclusive, so they asked: "Can Autism Acceptance and Autism Recovery Coexist?" as I believe both title and Twitter text. Definitely Twitter text. 

I responded, as I am wont to do.

.@think_inclusive Re autism acceptance and autism recovery coexisting: LOL NOPE. Recovery=pass for NT, lose recognition of passing effort. 

I mean, the problems are more numerous than that. But the idea that if you act "less autistic" in public, no matter how much effort that takes, you therefore are "less autistic," potentially even "not autistic anymore," is kind of at the root of some icky stuff. Including the idea of recovery from autism, really. Because how else has recovery from autism ever been defined? Seriously, when has recovery from autism as a concept ever been defined in a way other than "this person is no longer acting in ways that person X finds to be obviously autistic," with no regard given to the amount of effort required to do so?

I'm gonna go with never.

Sure, there might have been times when people interpreted that "evidence" to mean that things more core were changed too, but even that isn't consistently happening. It's an idea of autism as some set of external stuff in how we act, rather than a more internal thing of how our minds work.

And I have plenty of criticism for the goals and concepts of passing for neurotypical, beyond what I'm putting here. But.

Autism acceptance involves teaching autistic people as we are, accepting that our minds work... however they happen to work (that's not even necessarily consistent over time and between energy levels within a single autistic person, many of us have multiple modes of thought, but there are some patterns in how autistic people's minds tend to work.) It involves saying, "This person is always going to be autistic, and we're going to work on skills that are compatible with their autistic self, in ways that are compatible with their autistic self, with goals matching their goals." It views growth into an Autistic adult as the goal.

Autism recovery views growth into a non-Autistic adult as the goal.

I think that's a pretty core difference: autism acceptance says that an autistic child will grow into an autistic adult, and that that's great. Autism recovery says that an autistic child should grow into a non-autistic adult, and that an autistic person being able to "pass" for non-autistic, even if only by the cluelessness of those around them, is the same as being not autistic anymore. These are pretty incompatible ideas.

Some Joking Nerdery

I'm taking a graduate linear algebra class this semester. (I'm also taking difference equations, which looks a lot like more advanced linear algebra, at least while it's linear.) During the "lets go through all the stuff you probably learned in undergrad, then forgot, but kinda want to know for this class" phase, one of the things we've covered is linear transformations. T is the variable typically assigned. Linear transformations have kernels/null spaces, which is the stuff from the first set that gets sent to the "zero" point of the second set. These get denoted by a cursive N.

So the null set of a transformation T is  N_T. Now, the joke of NTs being null as in nothing is not even a little bit where I am going. Neurotypicality as a construct is pretty thoroughly terrible, yes, but calling a group of people, even privileged people "null space" as in nothing as the punch line is not my idea of joking nerdery.

Defining a function from people to something, like from people to some sort of directed distance from "exact average brain" or "the brain society is defined for" and pointing out that plenty of people are close enough to it to not have a problem, so are going to be close, but the null space isn't based on being close to the zero point. It's based on the function taking you to exactly the zero point. So  N_T being the empty set with no one in it because no one has exactly that idealized brain amuses me. (Even if it's not exactly one of the ways I think about neurotypicality/averages/social ideals, it's close enough to amuse me.)

The other idea I had was a space of neurotypes, where the zero point represents the idea of neurotypical as default (so basically this is a space that I don't really like, but I recognize it's how society tends to work.) Defining a function for that is honestly even weirder to me than defining it from people to the directed distance thing, though I could maybe make another function from that multi-dimensional directed distance thing to the neurotype labels the brains map to? In that case, N_T would actually be "close enough to that ideal to be privileged by it." That's fairly close to the other way I think about neurotypicality/averages/social ideals.

Neither of those things can actually work as linear transformations, at least partially because I don't think any of the people spaces work as vector spaces, and I'm not entirely sure that any of the spaces I'm mapping into work as vector spaces either, plus there isn't people addition to work like vector addition should. Also  N_T being the kernel of something instead of null space, cause that's two words for the same thing. Probably some funky associations there too.

"But AAC Increases Speech!"

So this is one of the big arguments I see in favor of giving people who don't talk, or who only talk a little, access to augmentative and alternative communication (or, as sometimes I think of it, maybe-actually-working communication. Because most of the time, if parents and teachers are considering AAC, that means that the communication that the person has is not working. Maybe it's a matter of not knowing all the words, maybe it's a matter of other people ignoring the behavior side, there's always multiple sides in a communication breakdown but that doesn't change the not-workingness.)

And people worry that if they let their kids use AAC, their kids won't talk.
Study after study shows the opposite, by the way, that if you do speech therapy type stuff and AAC stuff at the same time there's both a better chance of speech and more speech than if there was only speech therapy stuff. Even just "we're doing speech therapy, here's an iPad AAC app too" increases speech more than just the speech therapy.

But.

Here's my question.

Let's say that a person did decide, after getting their AAC device, that they were done trying for speech. Let's say that a person did decide that typing or picture cards or whatever else just worked better and they were done trying to make mouth sounds.

WHY IS THIS THE THING YOU ARE AFRAID OF?

No, really.

Why?

Where is the problem with this?

If a person is happy with how their AAC device is letting them communicate, which means it's working for them, why the insistence that they must also speak orally? Why the insistence that one method of communication is standard and ideal, while the other is, well, "alternative and augmentative." Why is AAC even needing to deal with the accusation that it could reduce a person's motivation to speak?

Cause I'm not going to lie. My motivation to speak is lower when I can just type. If I feel like I'm on the edge of speech going kaput, or speech is getting tougher, or whatever else? Once speech is an effort much of at all, if typing is an option I really do just go, "Screw it, I'm typing." And I fail to see the problem with that! It's me choosing the method of communication that works best for me, and that should be a good thing, not used as the reason to keep AAC out of people's reach.

On Technology's Role

I  read "On Institutionalized and Autonomous Access Forms: Toward a Refusal of Pity Infrastructure." As is typical of that blog, I'm not sure how much I understood the actual points the author was trying to make, but it made me think anyways.

I think I get what's being said here, though:

We can start to build communities that do not create singular models of access, but turn access needs into a constant conversation between people. Access needs can become an everchanging process based on persona deliberation.

And at least some of this:

Access and asking about access needs is built into the social patterns of disabled people amongst disabled people. This proves that access need not exist as a reassertion of private technology manufacturers and government bureaucracy.

Here's the thing:  I'm an engineer. I like finding technological solutions to problems. I like when technology can make a job or a process or a life or anything else easier.

What I don't like is when a lack of technology is used as an excuse to discriminate against people, or when a lack of technology is used as the excuse for failing at access. I especially don't like when technology is kept out of the reach of the people who need it most because of profit motivations or discrimination in general.

Before elevators, someone could have made the excuse "we don't have a way to get you up to the second floor" to a disabled person, and it might have even been true. That wouldn't have made it OK. Finding a way to make whatever the person needed be somewhere they could get at it, finding another way to get them to the second floor (there's ramps to the second and third floors in the gym complex, wide enough, smooth enough, non-steep enough that yes, you could take a wheel chair up that.)

When people don't understand the communication of disabled people, or when people don't understand that our actions have a purpose (even if it's a purpose that wouldn't make sense to others,) there can be problems. It depends on the attitude: If they say "I don't understand what you want, but I can understand your no and try stuff till I get it right if you want," that seems reasonable. If they instead decide that because they don't understand, there isn't any communication happening, that's not OK. Finding a technological solution to "we're having trouble understanding each other's communication" is a reasonable thing to try. (Google Translate, much?) Using technology to try to prove that communication isn't happening or using the current lack of a technological solution as an excuse to ignore communication is not OK.

So: The way you look at a problem matters. If you're looking at a problem in a way that is equitable and not oppressive (hard to do!) there may still be questions and problems where a technological solution makes it easier. The lack of technological solution isn't an excuse to do things wrong, but trying to find said technological solution and make it readily available is still cool.

If you're looking at a situation from an oppressive angle, the technology-based solutions you come up with are probably still based in that oppression and that's not OK.

Also:  There not being technology answers to any given access issue (yet?) doesn't keep disabled communities from figuring out ways to do access. Technology that makes it easier for people to do what they've already been doing, that makes it easier for communities that care about access to make it happen as a community? I think that's still worth trying to create, yes. 

I say "if you" here, but this is something I need to remember just as much, if not more, than most of my readers: I'm the engineer. I'm the one who'll be looking at problems and finding technological solutions for them, so I'm the one who's going to have to remember to pay very close attention to my perspective on the problems, to make sure that I'm not basing solutions in the idea of a person being broken or wrong or lesser, or of a culture being broken or wrong or lesser. I'm the one who's going to have to pay attention to, well, who I'm paying attention to for things like problem statements and possible solutions.

"how can an autistic guy prevent rape"

Welcome to another post in "someone found my blog by searching this, so I'm going to respond." Warning for discussion of rape, assault, and sexual abuse.

This is actually a really good question to ask. Reasons:

1. Overall, men do most of the raping. It's about 90% done by men. That means men are in a really good position to stop it by calling out their fellow men.
2. Autistic people are way more likely than people in the general population to be sexually abused or assaulted at some point. It's not only autistic women being attacked, not by a long shot, but still a majority.
3. Autistic people tend to spend a lot of time in the company of other autistic people, sometimes by choice and sometimes by segregation done by others. This means putting autistic men and autistic women and autistic nonbinary folks all in one place.

Now. I know that an autistic man isn't going to be able to do much to protect a fellow resident in an institution if the harasser/attacker/abuser is staff. I wish he could! But it probably won't actually stop the problem. Checking in with the fellow resident, letting them know that what's happening is wrong, offering to report it if there is anyone to report it to, those kinds of things have the potential to be helpful (and aren't limited by gender or neurotype!) Saying something in the moment might buy a delay, but that's a maybe, and it comes with a risk of being the next target. The power differential in an institution is a big problem, and it's not OK, but I'm not really comfortable telling residents to risk their own safety to correct injustices there. (I also won't argue if someone decides to.)

If it's between residents, however, there's probably less of a power differential going on, which means saying something in the moment or not leaving the attacker alone with their intended victim is more doable and more likely to be effective. The stuff for when it was a staff member victimizing a resident is still good to do. The thing to worry about here is more general rape culture stuff: most places don't like to admit that sexual assault happens on their watch, or if it does, to pretend it's the victims fault. This makes reporting against the will of the victim a really bad idea, because they're sadly probably right about the consequences that would come to them for being victimized.

And of course, if you're an autistic guy living or working in an institution, don't rape people there. This is a substatement of don't rape. This actually applies outside of institutions, too. Which I'm going on to, next.

Outside an institution, in mixed neurotype places, you're on the same kind of "how to prevent rape" as most guys. If someone you're flirting with tells you they aren't interested, listen. (Admitting that you have trouble with subtle and that you need more direct is potentially a thing because autism, but people being afraid to do the blunt thing because of a very reasonable fear of violence from men in general means you might not get the bluntness needed. Actual problem, leaving people well enough alone as soon as there is a signal of "no" that you understand is really all I've got here.) If you can see that someone isn't interested and the other guy isn't backing off, intervene. Tell him what you see, tell him to back off, tell him not to push another drink on the person! It's scary, yes, but think how much scarier it is to be the person who needs this guy to back off and can't get him to!

All this stuff I'm saying you should tell other guys not to do apply to you too: if the person you were hoping to date or to have sex with says no, or maybe, or not now, or anything of that sort, stop. Don't keep asking. Don't give them more wine. Definitely don't tell autistic people you could theoretically reproduce with that they need to have sex with you for the survival of the neurotype. That is extremely not OK. 

And another reminder: If you see someone else doing those things, tell them to stop! Yes, it's scary. Being the person this stuff is being said to is scarier. And, you know, you're the one who asked how to prevent rape. This is an answer: stop the lead ins, stop the "little" ways that boundaries are violated which lead to the big ones.

The Stuff and The Things

Also known as "What's Alyssa been up to?"

I started teaching precalculus. There were technical difficulties in the classroom (my computer didn't hook up to the classroom media properly even though it worked fine in the other classroom that's theoretically the same.) I haven't needed my text-to-speech yet, but I am going to need to figure out a different way to handle it than the classroom audio because the connection is not working.

They'd probably move my classroom if I asked (the chair of my department offered that he could get it moved in case of just this problem), but my class is mostly freshmen and they're having enough trouble getting used to college as it is, so I'd rather either fix whatever is wrong in my current classroom or see if the speakers I have for my iPad's AAC are loud enough for the classroom.

I have made an attempt at joining Best Buddies, not because I think the way they work is good (erm, no, not even a little bit) but because I want to make a point to the people there that developmentally disabled people can be mentors too. (I'm also looking forward to meeting my buddy, because yeah, I do like getting to hang out with other disabled people/people with disabilities.) I've heard from a friend with what I'm guessing was a similar idea that the online registration form directs you into the person being helped category if you say you have a developmental disability, so I have plans of attack in my head for either getting it changed or making a really loud fuss about it (hopefully the first, probably the second) should that still be the case. The university chapter said "of course you can!" when I asked about being a mentor while myself disabled, so I might be able to get them on my side for at least the changed part, but probably not the big fuss part, even though the big fuss is probably how the changed would happen if it's going to.

I went to the meeting of my school's graduate assistants union. This is a year for contract renegotiation, and I noticed that the only reference to disability at all is in the nondiscrimination clause. There's nothing about accommodations or access or anything of that sort, or about designing things to be usable by as wide a range of graduate assistants as possible in the first place. Which, I mean, I can kind of understand why it's not in there:

1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability.
   
2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

But.

I think it should be in there anyways, and there's a few reasons for that.

1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
   
2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
   
3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind,) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts.) There being such a group is a whole lot more welcoming for folks where disability stuff could be relevant than there not being any groups like that is!

I'm actually supposed to talk to the... I think it's the executive board or the negotiating committee or something like that, this Monday, right after lunch. When I brought it up, they said that it was important and they'd like to get it into the contract. One of the people on the board worked in disability services at another university for a while before coming to grad school, and she pointed out that she'd seen so many professors actively refusing to do access, and disabled students have all those same stories from the end of being the one who gets excluded, that this was a big problem. So it looks like I've got union support in saying this needs to be on the contract.

"stay away from autistic person"

This is another search term that has brought at least one person to my blog.

In general, no, you don't need to stay away from autistic people. Actually, it'd be kind of bad to make that a general thing that you do always. Being included in stuff (which is not the same as having our presence grudgingly tolerated or having people refuse to do basic stuff that makes it easier for us to be somewhere) is actually really nice! I like getting to do things with people, sometimes.

But there are times when "stay away" is the thing to do.

1. Meltdown.
   Autistic people wanting everyone and everything to go away when they are melted down or shut down is pretty common, especially if overload was a contributing factor. It's not every autistic person, but "stay away" in the form of "give space" is a decent starting point for an autistic person who is melted down or shut down.
   
2. Request!
   Sometimes an Autistic person will ask you to back off a bit, because you are in their space. This is similar to when, oh, anyone you didn't know was autistic asks you to back off a bit because you are in their space: you should do so. If someone says "too close" or something similar, or they start backing away, respect that. Seriously.
   
   This also goes for if someone asks you to go away because they are overloaded and can't deal with people right now. Respect that.
   
3. If you have trouble seeing us as human.
   If you have trouble seeing autistic and human as being traits that a person can have simultaneously, you should fix that before you knowingly or intentionally spend time with autistic people. I mean before. I do not mean "try to learn it by spending time with the poor dears" or some such, because frankly, the way that you'll probably be taught to see and work with us in those kinds of things makes that problem worse, not better.
   
   So if you have trouble with the idea that autistic and human are not mutually exclusive and that we are already real people while being autistic (including if "person with autism" is the only way you can remember that we are people, which is different from having been taught to use it by people who prefer it because it also theoretically provides that reminder) then you should probably stay away from autistic people. That's not for your sake, by the way. If it's for this reason, it's to protect us from you. 

Why actually autistic tag

I got a couple hits from someone searching "why actually autistic tag." I'm not entirely sure why I got those hits, because there are lots of Tumblr posts that answer the question directly and I haven't done so here yet. I'm not sure if I did on Tumblr either. But, if people are going to be finding my blog by asking that, I suppose it's relevant enough for me to try to answer.

So.

Once upon a time, stuff about autism was generally in the "autism" tag. It didn't work very well, because much as the autism tag is currently filled with people posting pictures of their siblings and children (often without mentioning that the person is OK with this, which is a problem for a lot of reasons) tagged with autism for no apparent reason, people using an autism tag as an insult for people they don't like, advertisements for Autism Speaks walks, and people talking about their autistic children and siblings as mysterious. All this is generally very tiresome for autistic people to read and dig through just to find a couple posts by actual autistic people about their own lives. Additionally, when we said things about how the assumption of "mysteriousness" or such othering descriptions were really not cool, if it was tagged "autism," there would be a pile of angry parents and siblings.

Basically, the "autism" tag was really unwelcoming for actual autistic people! It was all other people talking about their autistic relatives, generally in ways that squick autistic people. This is similar to the problems when autistic people tried to organize at conferences about autism run by non-autistic people. They really didn't like it when autistic people started talking to disagree with them.

So another tag started: "actually autistic" or "actuallyautistic." Both versions of the tag get used, a lot of people use them pretty much interchangeably, a lot of people use one or the other, a lot of people use both on any given relevant post. I don't know of any pattern relating to who uses which ones, but that doesn't mean there isn't one. That tag is meant as "the person posting this is themself autistic." Not everything on that tag is immediately and obviously autism related, but it's usually something that the poster thinks is related to their own autism. Sometimes it might be something that an autistic poster wants other autistic people to see, which is a pretty reasonable use of tags.

Organization-wise, Autism Women's Network (AWN) and The Autistic Self Advocacy Network (ASAN) both post there, and Parenting Autistic Children With Love and Acceptance (PACLA) sometimes will if the mod who's making the post is themself autistic (which might be all the tumblr mods?) Autistics Speaking Day and Autism Positivity flash blogs both post to the tags as well- these are autistic-run flash blogs. Having run the tumblrs for both on occasion, I only tag the autistic-written posts as actuallyautistic, generally. But since I'm autistic and autistic people sharing links to relevant things, autistic-written or not, has been a thing in the tag before, I don't worry too much about the ones where I'm not actually sure if the writer is autistic or not.

Anyways: The short version is that the autism tag was and is an unsafe place for many autistic people because folks didn't get that autistic people were following and reading and might be capable of having opinions on what we were reading, the actuallyautistic/ actually autistic tags are safer for some autistic people, and thus they exist.