Alyssa's blog

Alyssa is an Autistic doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

April is an important month in the world of autism. According to the UN, it's Autism Awareness month. To organizations like the Autistic Self Advocacy Network, Autism Women's Network, and others run by actual autistic people, it's Autism Acceptance month. (Thanks Paula!) For me, like many other autistic people, it’s that month I’ve wanted to be over since... mid-March. However, if I hide under a rock for the entire month of April, I wont get any say in the kind of awareness that gets spread about me!

So, here I am, telling you all what I, as an autistic graduate student, would like you to know about autism.

Being visibly autistic is not, in fact, an emergency. In a university environment, I have had professors or administrators become very concerned when I rocked, flapped, didn't make eye contact, needed to type instead of talk, or even just disclosed that I'm autistic. A friend of mine got into trouble because a rock climbing teacher saw her flap her hand. That sort of reaction doesn’t help anyone, especially once you consider that we might be doing the characteristically and visibly autistic thing in order to be more able to work on our actual priorities, like classwork or research.

Talking about specific needs is helpful. Terms like "high functioning" aren't. Calling someone "high functioning" will lead to missing some of their needs. Calling someone "low functioning" will lead to missing some of their abilities. It's best to drop the ineffective shorthand and talk about whatever needs abilities are relevant at the moment. If you mean that someone needs to type to communicate some or all of the time, say that. If you mean that someone is able to live alone with the proper support, say that. If you mean that someone needs help getting food, say that.

Autism-related needs vary between people. One size does not fit all. Letting me work from home is actually a great idea, because I have more control over my environment. Some of us will need to work in the library, the lab, or some other consistent but structured location. I need a meal plan, because keeping myself fed is an issue when I have to cook for myself. It’s either that or consistently go acquire ready-made food without one. Other autistic people need to eat anywhere except the dining hall, because they can't eat the provided food, they can't deal with the noise and crowds, or both. Rather than assuming you know, "what autistic students need," ask us what we need. You can suggest some of the supports you've heard can be good for us, but be prepared for us to let you know what doesn't work.

Our needs and abilities vary between environments and over time. One size may not fit one. My ability to cook varies between needing three or more attempts to make myself tea in a kitchen that has a hot water spigot (no kettle required) and being able to make a three-layer chocolate cake with chocolate whipped cream frosting from scratch. My ability to feed myself varies between staring in confusion at the items on the buffet table at my dining hall, trying to remember how to serve myself, and making the aforementioned cake. My ability to speak varies between none and winning a class debate I hadn't prepared for by explaining on the fly why my opponents evidence supported my argument, not his. These abilities don't necessarily vary together, either. I once scored "Advanced" on a test of Chinese speaking proficiency while completely non-speaking in English.

This means our productivity is likely to vary over time. If it's taking me three tries to make tea, that's time I'm not spending on research. It could also be a sign that I'm having trouble concentrating, which isn't good for doing research. (Unless I'm wandering away from the attempt at making tea to scribble down "quick" ideas related to my research that then take so long my tea gets cold and over-steeped. That's just bad for keeping hydrated.) Over the course of a semester, this is likely to average out. Over the course of the week or two between meetings for research projects, it might not. This is especially true if I have multiple ongoing projects and have hyper-focused on one of them for the last week.

Meeting our needs is critical. Sometimes, our needs and abilities will vary for as-yet-unknown reasons or for reasons outside our control. Other times, speech will be gone and I'll stare in confusion at a pile of sandwiches in my dining hall, and there will have been a clearly avoidable cause for this. If I'm expected to work in an environment with construction or with lights where I can see the flickering, my abilities are very likely to take a dive. I don't actually care if my speech gives out, because I have access to other communication options. I do care if I have trouble understanding what to do with the food in front of me. Among other things, I'm not productive when I'm hungry!

[Image courtesy of Dr. Melanie Yergeau, used with permission.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

Professor Stephen Hawking died on March 14, 2018. From all directions, I've been flooded with reactions to his passing. Even people who don't usually post about disability topics or about science are sharing their reactions. As a disabled graduate student and scientist, I’m feeling the loss.

There is, of course, his actual scientific work. He argued for the possibility of what is now called Hawking radiation, through which a black hole can effectively emit particles due to quantum effects. He then helped explain how this was possible from an information perspective, losing a bet in the process. That wasn't his only scientific bet, either — he lost $100 when the Higgs boson was found, too. He advised graduate students in theoretical physics, leading them quickly into high-risk, high-gain projects. Basically, Dr. Hawking was a theoretical physicist as well as a mentor.

Dr. Hawking was also disabled. He started noticing symptoms in his final year at Oxford, and he was diagnosed with amyotrophic lateral sclerosis (ALS) in graduate school. (This means he was disabled in grad school, by the way!) He used mobility aids — crutches, at that point, and later a wheelchair. He wrote about the barriers he faced in academia, even as a prominent scientist. And he even wrote about barriers to participation in his the 2011 World Report on Disability address.

In addition to using a wheelchair, Dr. Hawking was one of the most visible users of Augmentative and Alternative Communication (AAC) around. Quite a bit of development for communication supports and alternative access came from Intel working with him and sponsoring his devices. A graduate assistant even helped develop the cheek switch system he used to access his computer. As a scientist who uses AAC, if faster and less frequently than Dr. Hawking did, I look to him as proof that AAC users can be scientists and professors. He was a nice example to have.

Not all of this recent attention on Dr. Hawking’s life, however, has been positive. His disability also means that I get to see lots of people talking about how he's "free" of his disability (or his wheelchair) now, that death somehow frees him from the confines of his disability. Several people have written about why framing death that way is scary, and it boils down to this: if you take death as freedom, and assistive technology as what we need to be free of, what does that mean for our lives? From questions as big as life and death to those as mundane as whose classes I'll take, I pay attention to how people talk about disability. It's part of navigating the world while disabled.

This semester Dr. Hawking’s presence is felt in the work I’m doing, which involves brain computer interfaces. I'm reviewing the scholarship on one kind of brain computer interface in my physiological psychology class, and I’m presenting next week on an experiment with the same type of system. Dr. Hawking can be seen as a partial inspiration for this choice — these interfaces are being developed with people with disabilities, including ALS, in mind. One reason I'm specifically looking at work done with disabled participants is that a lot of the development has been done on subjects with no known neurological disabilities. Dr. Hawking, for example, didn't use brain computer interfaces partially because they couldn't get a good signal from his neural activity. If these interfaces are being designed for people with neurological disabilities, but the scientific community largely tests them on people without neurological disabilities, then we need to be aware of this shortcoming.

Have you ever been affected by the passing of a scholar, whether in your field or not? How might their work have affected yours?

[Image courtesy of Flickr user Daniel Arrhakis under a Creative Commons license.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

I'm a graduate student in neuroscience, I'm registered with disability services, and I'm pretty out about being disabled... in certain circumstances. Did you notice that it's my first name alone on my byline? That's intentional. At the same time, I took a class last semester about augmentative and alternative communication (AAC), as a part time AAC user, and I've been known to wear a T-shirt announcing my neurotype while teaching.

The moral of that story is, disability disclosure is complicated.

We're often taught to be ashamed of our needs, and to believe that they aren't reasonable. Is it just that we shouldn't be here? Whether or not the shame holds, there are times when being openly disabled just isn't practical — proving disability discrimination can be hard, and encountering plausibly unrelated barriers as soon as we ask for accommodations is a common fear.

So, how openly disabled do I need to be to take your class?

If I need accommodations, then I need documentation, which I have to give to disability services. Then I have to make sure you get the disability services letter. You'll know I'm disabled, but you may or may not know what my specific disability is. In practice, you'll know what my disability is, because it can make things easier and it shouldn't be a big deal. Also in practice, I understand why people might want to keep disclosure to a minimum, because sometimes it is a big deal. In theory, you and I could be the only people who know I'm disabled, and you might not know what disability I have.

Now let's consider what happens when accommodations are implemented.

When the accommodation is extra time, other students might notice who's never in the classroom for exams. I guess that's possible? I certainly never noticed who was missing at exams. If everyone started together, and then students who both had extra time and needed it on this exam went elsewhere at the end of the time, that might be noticed. How noticeable this accommodation is depends on how it's done at the individual university.

When the accommodation is only being called on when one's hand is raised, I suppose other students could theoretically notice that certain people don't get unexpectedly called on. Honestly, I’m not going to catch on if someone else has this accommodation. I'll just notice if and when I get unexpectedly called on. Unless, of course, the professor normally refuses to call on raised hands. Then it's pretty obvious if someone only gets called on when their hand is up. Having never taken a class with that sort of policy, I have no idea if I've ever had a classmate with this accommodation. I’m told it’s a common option for selective mutism, anxiety, and similar disabilities. It's what I was initially offered I told disability services I can't always talk. I could have taken that option, rather than used augmentative and alternative communication (AAC), which everyone notices.

When the accommodation involves the use of a device that is allowed in the classroom, or already used in the classroom for other reasons, it can be pretty subtle. If, for example, fidget objects are already allowed, no one's likely to notice or care that I'm using mine because I'm autistic. Or if I need to take notes on my laptop because I can't always read my handwritten notes, and laptops are generally allowed, my classmates aren’t going to know why I'm using it. You might not know either — why turn in paperwork to protect my ability to do something everyone is already allowed to do? (One could argue that it's a self-accommodation or not even an accommodation at all when the action or support is allowed by default, and we don't need to disclose in order to make use of it.)

It's when the accommodation involves the use of a device that is otherwise banned that I have to out myself in order to take your class. Fidget spinners are banned? I'm still going to need to fidget, so I can find a different way of meeting that need or I can out myself for an exception. Laptops are banned? I still can't consistently read my handwriting once I'm removed from the context, so I'm going to need to go without usable notes, get a note-taker, or out myself to my classmates as well as to you.

You'll notice that this isn't just about technology in the classroom. It's not just laptops. It's a question of how the university is designed: some spaces won't require me to request accommodation. My needs are met by the default design of most online courses, for example. In other spaces, I'll need to turn in my disability services letter, but other students might not know about my disabilities. In yet other spaces, my accommodations will be visible to everyone in the room. Which spaces are which varies with both individual needs and the design of the space, including its rules: what's normally accepted, and what's not?

For students who aren't out as disabled to their cohorts or classmates, having to out themselves is a barrier. How out do we need to be, in order to take your class? How out do we need to be, in order to make it through the door?

[Picture of their laptop, ear defenders, and assortment of fidget objects by Alyssa]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

Fellow GradHackers have plenty to say about mentoring as a graduate student, both about making sure we benefit from our relationships with our mentors and about being mentors ourselves. Building networks is a huge (and hard) part of graduate school, and mentoring deepens our communities.

Being an Autistic graduate student makes good mentoring even harder (socialization is hard!) and even more important. After all, I'm navigating a system that wasn't exactly designed for people like me. In practice, this means I have multiple support networks with varying levels of overlap and with varying types of relationships. They help me ensure I’m making progress on my research, working towards my other degree requirements, and not getting too burned out from the stresses specific to being a disabled person in academia.

My major professor is obviously one mentor. The senior grad students in my lab are some others. They teach me how things work in the lab, and how things work in the department. Since I recently started my fourth semester in the lab, at this point I am also serving as a mentor for undergraduates. I expect managing undergraduate students will be an educational experience!

Since my major professor is in biomedical engineering and affiliated with the interdisciplinary neuroscience program I'm in, I have yet another, overlapping mentoring network related to my program. For this reason, I speak to my program director regularly. I don’t see her as often as I see my major professor, but I have similar reasons to talk to her: I need to stay on track with my degree requirements. Neuroscience and biomedical engineering have some differing requirements, after all.

Finally, there's my disability-specific network. This is where mentoring relationships start to look less like informal but (loosely) hierarchical relationships and more like an Ewok village. I don't limit my requests for guidance to those who rank "higher" than me in their respective field. My friend who gets extra time because she doesn't need it is absolutely one of my mentors, and she's still working on an undergraduate degree. She's also been an activist almost as long as I've been alive. People I go to for advice may not even be in the same fields or hierarchies I am. Dani Alexis is a developmental editor and a freelance writer. She's also ten years my senior but calls me an "elder." The people I'm looking to for advice may also be looking to me!

As a graduate student, I need guidance for a number of different reasons. The people best equipped to keep me on track in the neuroscience program aren’t necessarily the same ones who can teach me how to do autism research while being myself autistic. The people who who understand biomedical engineering research might not be able to advise me on how and when to disclose a disability on the job market.

What issues do you need the support of a mentor for? Who is best equipped to help you with those?

[Image by Flickr user Brian Ujiie and used under Creative Commons licensing.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

In the title to this post, how is parenthetical because the question really is: do I tell my students? The decision to disclose is complicated. There's literally an entire book about this.

Over the summer, while I was co-writing a chapter about teachers who use augmentative and alternative communication (AAC) strategies, I read quite a bit about and by teachers with disabilities. Some of us are "outed" the moment we enter a room. Others, like myself, can somewhat "pass" ...until we can't. Or we teach online – one piece I read was by an educator who experimented with the timing of her disclosure because online teaching gave her the option to do so.

So, do I tell my students? Autism, after all, has quite a bit of stigma attached. Disclosure can be scary and sometimes risky, even from positions of relative privilege. Some of us will only admit to how our brains are wired when we do so anonymously. It's not unusual for disabled graduate teaching assistants to be more willing to disclose (and request formal accommodations where applicable) as students than as teachers. As teachers, we're more likely to quietly self-accommodate.

The first year I taught in the math department, I was no exception. I had autistic pride buttons on my backpack, as a student. As a teacher, I kept it quiet. As a teacher, I remembered reading about Dr. Yergeau's involuntary commitment as a new faculty member, and the reactions to her autistic pride button. I removed the buttons from my backpack every Monday, Wednesday, and Friday morning before teaching 9:00 a.m., or I brought a different bag to class. I never told my students. (I did tell my supervisors, since my part-time AAC use is a formal accommodation.)

My third semester teaching in the math department, a student came to me with documentation from disability services. She was scared to have the accommodations talk, even with a letter in hand. I told her (and only her!) that I was disabled too, that I understood her worry, and that yes, I would make sure she got what she needed. She was surprised, but relieved that I seemed to understand. We talked about the process with disability services - we both had executive functioning issues, which made it tricky to organize the needed meetings and paperwork to secure accommodations even after getting past the fear of asking for help. There are so few “out” disabled people on campus - I think we were both glad of the opportunity to talk to someone who “got it.”

As a lab assistant in electrical engineering, I never had a discussion with my students about my disability or my accommodations. I did, however, finally have a day where I had to assist in the lab, and I couldn't talk. Other than one student who really wanted to tell me how sad it was, the lab went OK, and then my students knew. Some days I even started wearing my Autistic Party Giraffe T-shirt in the lab.

Now, my accommodations aren't subtle when I need them, which means my disability isn't subtle either. If a teacher stops speaking entirely, relying on writing or typing instead of speaking rather than mixed with speaking, students are going to notice. I risked them finding out about my disability only when it became impossible to hide. Eventually, I had to teach when I couldn't talk, and the students figured it out. Because the reactions I got were, by and large, supportive, I felt safe being more open about my status as an Autistic teacher. That doesn’t mean I always tell people, or that you should tell them for me. (Seriously. Don’t tell my students I’m autistic for me.) It just means that when the situation warrants it, I’m willing to say that yes, I’m Autistic.

What identities have you needed to consider disclosing? Do you tell your students? Why? Why not? What identities don't you need to think about disclosure for?

[Image courtesy of Dr. Melanie Yergeau, used with permission.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This isn't part of my (loose) Disabled in Grad School series, but my literature gap is related to disability.

It's pretty common for academics to talk about gaps in the literature. We want to find them, right? If we find a gap, that's a spot where we can do some work, as long as it's an area that will be of interest to other researchers in our fields. If we're not looking for a gap, we'd at least like to find an edge in the literature that we can build off of. I’ve not seen as much advice about how to do a literature review around a gap.

I had to do just that this past semester. Technically, I think I found two gaps in the literature and then I looked at their intersection. That became my project this semester in a class about Augmentative and Alternative Communication (AAC). There isn’t much AAC research specific to autistic adults, or to part-time AAC users. You might notice I'm in both of those categories. Being an autistic adult who uses AAC part time and is interested in AAC research is actually part of how I noticed the gaps.

So, I proposed my project and then I needed to do a literature review. I got somewhat lucky, right away. A systematic review of AAC intervention research done with adolescents or adults on the autism spectrum came out within the last few months. I was only somewhat lucky because this systematic review only identified four adult subjects -- people who were at least 18-years old when they participated in research that was specifically about AAC interventions in autism. The problem with doing a literature review for a major, massive gap is that ... it's a major, massive gap in the literature. Now what?

1) Re-define "closeness" and "relevance" to your topic. It's relative. There is nothing in the peer-reviewed literature that covers exactly the intersection of my two topics. If I wanted autistic adults, there’s four subjects the systematic review found and a presentation about employment. The systematic review wasn’t talking about part time AAC users, and it wasn’t clear if the employment presentation was either. If I wanted AAC for autistic people with functional speech, there’s a 17-year-old retrospective analysis of technology use patterns of students with autism. It's about kids, and only five of them both had functional speech and got AAC devices. If I wanted part-time AAC use by adults, I can find some references to it in research focused on cerebral palsy. It wasn’t the main topic of the research, but it was noted that some participants used oral speech to communicate as well as their AAC systems.

To be clear, I still needed to spend more time on the essentials and speed through my periphery - the articles that are interesting but probably not key to my argument. I just had to redefine my periphery, much like I had to redefine closeness and relevance. Those articles I described are as close to center as I could get in the peer-reviewed literature.

2) Consider what counts as part of "the literature." I knew Typed Words, Loud Voices had relevant writing in it. It was by people who type to communicate, including contributions from autistic people who use AAC part time. It was also a book -- not peer-reviewed, but a book. It wasn’t a stretch to count that as part of my literature. (The somewhat awkward bit was that I'm in this book, and also did the cover art.)

Then there's media coverage. Fellow GradHacker Eva suggests following it for an idea of how people are talking about our fields, so I included it as part of my literature. An UpWorthy post about the guy who programmed Emergency Chat? That's exactly the sort of thing I wanted to know about, and I wasn’t about to ignore it just because of where I found it. Since the creator, Jeroen de Busser, was named in the post, that led me to his blog -- he's got a tag all about the app!

3) Find sources to back up the claim that there is, in fact, a gap in the literature. Here's another reason that systematic review on AAC interventions for autistic adolescents and adults was a lucky find. One of its main findings was the need for more research on AAC and autistic adults, because there isn't much. A survey from AssistiveWare, a company that makes AAC applications for the iPad, similarly told me that while plenty of adults use AAC part time, research generally focuses on full-time use. Now I know why I had to redefine "relevance" and "the literature," and I have citations to tell everyone else why too.

4) Follow authors and references to find more sources. An UpWorthy post led me to Emergency Chat. I found the retrospective analysis of technology use through a reference in a newer paper. I discovered a presentation on exactly my topic at Autism Society of America because a blogger I follow helped give it. The reference list of a relevant paper (or links from a relevant blog post) makes a great resource when you're doing your own review, and it gets all the more valuable when finding work near your topic is hard.

Have you ever had trouble finding sources relevant to the topic you were reviewing? How did you handle it?

[Image by Flickr user Eddi and used under Creative Commons licensing.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

I dread the accommodations talk.

I’m fine with it as a teacher. Then, I'm proud of my students for understanding their needs and caring enough about getting those needs met to undertake navigating the disability services office, getting the letter, and scheduling a meeting with me. It means they're somewhat self-aware and that they care about doing well in my class. When I had office hours, so few people came that I'd be proud of anyone who showed up to them outside an exam week. Students coming in with accommodation letters are no exception.

I dread the accommodations talk as a student.

I know my accommodations are completely useless to someone who doesn't need them. They're also unusual, to the tune of my school's disability services office having entered them into the system for the first time when I got them. I'm Autistic, and I'm usually but not always able to speak. I get to use augmentative and alternative communication (AAC) in class, as needed. For me, that means writing or typing instead of talking. Given that I’m the only one at my school to have this accommodation, I’m not surprised that most of my professors have never heard of it. This can make the accommodation talk interesting.

As my best case scenario, I've had professors realize using AAC in class would give no advantage to a student who didn't need it. It actually slows me down and makes it harder to ask questions, compared to functional speech. These professors tend to merely glance at my letter, and a couple have even said they don’t need to see it.

As my most confusing scenario, I've had professors who were convinced that extra time for taking tests was going to be on my letter even though I never mentioned it. They continued to be confused by the fact this accommodation wasn’t mentioned in my letter, sometimes asking me again if I need it before the first exam. It doesn’t help that I'm the first person to finish exams, which often happens. As long as they don’t make a fuss about my AAC use, I can work with this. I just don't understand where they're getting the assumption about extra time.

As my worst case scenario, I had administrators respond to my saying, “I’m autistic,” with “People like that shouldn't be in college.” This was on a study abroad program. Things got messy, because the United States side of my program was bound by the American Disabilities Act and the Tianjin side was not. I did get to type instead of speak when needed, but I was also nearly sent home the first time I needed AAC, even though I’d disclosed ahead of time. It was hard to deal with, and it’s probably 95 percent of the reason I dread the accommodations talk. The other five percent relates to disability stories I’ve heard from others (we pay attention to how you talk about us!).

Then there have been classes where I didn’t have the accommodations talk ahead of time. I was afraid, and I thought (hoped) I could manage without my accommodations and keep my professors from noticing. Sometimes, it even worked. Other times … not so much. I, like other people registered with disability services, got documentation together and navigated the bureaucracy involved for a reason. Isn’t it better to make sure we get what we need, rather than pushing us to go without and risking an experiential lesson in why we have accommodations?

[Image by Flickr user Kevin Dooley and used under Creative Commons licensing.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is part of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

October is Augmentative and Alternative Communication Awareness month. Augmentative and Alternative Communication (AAC) is an umbrella term for communication strategies that people use when speech is impossible or insufficient. Sometimes this means grabbing a pen and paper to write notes. Sometimes it means a scanning and switch system like what Stephen Hawking uses – the computer moves through options, and the user stops the computer when it gets to the right one. It can also mean using a picture board, a mobile application, or any number of other strategies to communicate.

Earlier this month, I mentioned that I have slightly unusual classroom accommodations, but I never said what they were. I get to use AAC for teaching and class participation as needed. When I can talk, I do. When I can’t talk or can’t talk very well, I mostly wind up writing. Sometimes I use FlipWriter or Proloquo4Text, two iOS applications good for in-person typed communication.

How likely is it that you’ll have a professor, a classmate, or a student who uses AAC? I don’t know. I know I’m the first person to have this as a formal accommodation at my university. However, there are others elsewhere – the chapter I wrote over the summer was about teachers who use Augmentative and Alternative Communication. And I know the ubiquity of tablets is making the option available to more people than ever before. Whatever the likelihood of your encountering an AAC user at university is, I’d say it’s increasing.

So, what should you do if you have an AAC user in your class? And what shouldn’t you do?

Don’t try to finish our sentences or guess what we’re saying. Correcting you will often take longer than finishing the message would.

Do allow extra time to respond. I type about 60 words per minute. That’s faster than average, but onversational speech is usually between 120 and 200 words per minute. My faster-than-average typing is less than half as fast as your conversational speech, and most AAC users are not faster-than-average typists.

Don’t restrict access to our communication systems. This is functionally equivalent to taping our mouths shut. This is (hopefully) less of an issue in college and graduate school, since we’re all adults but, yes, teachers do this to elementary students who are talking out of turn with their devices. If it becomes a classroom management issue, handle it the same way you would if we were using our mouths.

Do provide discussion questions ahead of time. This ties in with allowing extra time to respond: if we know the question, we can formulate a response ahead of time. This moves some of the extra response time outside the flow of discussion and lets us make longer responses. (This is how Stephen Hawking does interviews that appear to be in real time.)

Don’t project how you think you’d feel about not being able to talk onto us. I had a student do this to me while I was assisting in an electrical engineering lab. It was awkward, because I was trying to help her fix a circuit and she kept telling me how sad it was that I couldn’t talk. Don’t do this.

Do ask how to be a better communication partner. These are reasonable places to start, but by no means an end. As the people involved and the AAC systems used vary, so will the best things to do. Ask! (It’s best to do this outside working time. Go get coffee or something.) Then listen to what they tell you, even if it’s different from what I said here.

For more information about AAC, you can visit the International Society for Augmentative and Alternative Communication. For additional writing by AAC users, you can read Typed Words, Loud Voices or Speaking up and spelling it out: Personal essays on augmentative and alternative communication. I also have an AAC tag on my blog.

[Image is a selfie Alyssa took with their most-used AAC system for a prior AAC awareness month.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

This post is the start of a (somewhat loose) series about being disabled at university, with a focus on graduate school: problems we encounter, how we deal with them, and what you can do that will make things easier for fellow graduate students with disabilities.

Today, I’m starting with stories. Have you ever been told a story where you're clearly expected to relate to one perspective, but you don’t?

I'm a teacher as well as a graduate student. Thus, my fellow educators often expect that I'll relate to their teacher stories. Sometimes I do; I don’t think it’s unusual to shout at the pile of grading while figuring out what the common errors are and what misconceptions I therefore need to address in class. But other times, I don’t; I’m a disabled student. I may hear your tale and make a mental note not to take a class with you. I don’t want to be your next story, and I don’t want to deal with you saying that you “believe in me” while denying me the accommodation I need in order to live up to that belief.

So, here are two stories that I’ve heard from teachers, and one from a neurodivergent student.

Story the first:

I'm sitting in class and my professor starts to tell a story. Apparently, a former student of this professor had required extended test-taking time, specifically double time. He said that she had already failed the class once with time-and-a-half on tests. This second time around, he left her with an exam for a bit over double the usual time while he kind of forgot about the test. When he went to get the test back from her, she was still working. She passed the class this time around, but the story is somehow supposed to convince us that she didn’t really need extra time.

I don’t know why he's telling this story in class. I know it's not directed at me, because I haven’t turned in my disability paperwork and he doesn’t know I’m autistic. I won’t turn my paperwork in for this class.

Story the second:

I'm at lunch, at a table with several professors. For whatever reason, disability comes up. It's not that I don't remember the specific context, but that I get treated to this story every time disability is mentioned around one particular professor.

Every semester, there are some students who get extra time and a quiet room on exams. The professor telling the story thinks the need for a quiet room is a bit silly, because the room is quiet during an exam anyway. I have to assume his ears aren't as sensitive as mine. I can hear plenty going on during exams, even if no one is talking.

He tells the students that he will set up their extra time and the quieter room, but that he strongly encourages them to think about whether they can take the exam in the main room. They take the first exam with extra time. Many of them turn it in within the originally allowed time. The second exam proceeds much the same way, with a similar encouragement from the professor. Come the final, the students all "decide" they're going to try taking their exam in the main room.

I think about how much pressure a professor can exert on their students without explicitly requiring anything specific, and I worry for those students.

Story the third:

A friend of mine gets accommodations. One of them is extra time and a quiet testing room. Odd as this might sound, she basically gets extra time because she doesn't need it. Counterintuitive? Yes. Important? Also yes. The extra time is there to protect the accommodations she really needs. If my friend’s professors don’t know she’s fast on tests, they can’t use that knowledge as an excuse to deny her other needs. Unfortunately, professors who see how fast she finishes tests sometimes conclude that she can’t really need her other accommodations. I don’t know how they reach that conclusion - do they think that if a person is disabled in one way, they can’t be good at anything else? Do they think that if a person has one above-average skill, they can’t be disabled or require accommodation for anything else?

I don’t know where the presumption that her other accommodations aren’t needed (or that the professor knows better than the student does) comes from, because it doesn’t make sense to me. What I know is that people lose accommodations due to the assumption that they aren’t really needed, or have to spend energy they could be spending on the class fighting to keep those accommodations. That’s a problem. In this case, the student and her disability services office mutually decided they were sick of having that problem, so now she gets extra time and takes her tests in the disability services office.

The common thread in all of these stories is professors who think they know what accommodations a student really needs (or, more likely, doesn’t really need). As a disabled student with slightly unusual classroom accommodations, I’m scared of my fellow teachers who tell these stories like they should be proud. As teachers, we don’t live the lives of our students, disabled or not. When they tell us what does and doesn’t work, we need to believe them.

I guarantee that our disabled students have heard 99% of the suggestions teachers make about how not to “need” their accommodations, possibly 99 times each. If they’re not doing it, there’s a reason. We know our subject, not the balancing acts of other people’s disabilities, and we shouldn’t be like the professors from these stories. I worry for their students, and I avoid taking their classes - especially if they tell these stories when it's my need for accommodations that comes up!

[Image by Flickr user Michael Fötsch and used under Creative Commons licensing.]

Alyssa is a doctoral student in neuroscience at the University of Rhode Island. Follow them @yes_thattoo or check out their personal blog.

“Piled Higher and Deeper” by Jorge Cham

Phdcomics.com

While astronomical summer isn't over yet, our semesters are just now starting, or about to start. (I started classes this past Wednesday.) Summer "break" might be a myth, but our summer routines aren't quite the same as our semester routines. Most of us don’t have classes in summer, but teach or take classes in the fall. That means we have more open time, but it also means the time isn’t structured -- both productivity and procrastination get easier. It may also be conference season: the lack of summer classes means you don’t need to find someone to cover your class while you’re away. Campuses tend to empty out in the summer, which means fewer distractions but also fewer social opportunities if you were involved on campus during the semester. Now that the semester is starting up again, we have to un-do all those changes. So, how do we make the transition?

Look back on the summer.

My summer to-do list isn't done (and was much too long), and yours probably isn't finished either (and may also have been too long). If you're like me, you've spent most of the summer focused on the parts of your to-do list that aren't done yet, and therefore concerned about how much you are (not) accomplishing. Now is a good time to take a look at what you did. This summer,

I co-wrote a chapter about teaching while needing Augmentative and Alternative Communication (AAC).

I got through the first round of revisions for that chapter.

I read and drafted a review of Afterward for Disability in Kidlit.

I found a place for the formal, not-liveblogged version of my review of Uniquely Human.

I did several rounds of revisions for my unusually academic "personal" narrative for Body Battlegrounds, which I am finally done with.

I did some of my revisions for a piece about fanfiction and disability representation.

I taught an Introduction to Counting and Probability course.

I substitute taught for a bunch of other math classes.

I did most of the reading for a review on sleep monitoring methods, and figured out how I want to organize that review.

I still have a lot to do - note that I only did some of the revisions for my disability and fanfiction piece, and that I haven't written the review on sleep monitoring technologies yet. I'm just about ready to sit down and start writing, which is on my to-do list, but it's nice to see that I really did quite a bit!

Look forward to the fall.

We've all got things scheduled for the fall semester. I'm taking my lightest course load ever, which should mean I can make some real progress on research. With a sense of your fall responsibilities, you can figure out what a reasonable schedule will look like.

• I need to schedule and study for my qualifying exams.
• I am taking three evening classes and have to be prepared for journal club each week.
• I need to actually write the review about sleep monitoring methods.
• I really should finish revisions for the fanfiction and disability piece.

There are fewer items on this fall list, but that's partially because the items that are there are recurring events. I'll have classes three days per week. I have the best concentration for reading in the mornings, but write best in the early afternoon. I'll have a meal plan, which means I need to get lunch between 11:30 am and 1:00 pm every day, as well as dinner between 5:30 pm and 7:00 pm. This roughly divides my day into morning, afternoon, and evening slots. Now it's time to remember that I'm disabled. Realistically, I can alternate having responsibilities in one or two of these slots per day, as long as one of my weekend days stays totally empty. Urgent and unexpected things will come up, so I should probably schedule one slot less than I can really work. (If nothing goes wrong for a week, I can add the "extra" shift back in on Friday.)

Get going!

The semester is here. Summer is over. That means the routine is changing. It’s easy to shove everything from the summer to-do list onto the fall to-do list and then push yourself to catch up, but you’ll pay later. Set a reasonable pace for yourself, because running out of gas around midterms is no fun. You could even make your schedule a touch lighter than you need to, so you have space for the unexpected. Then keep to it!

What did you get done this summer? What's on the list for the fall? How are you arranging your time in the fall to make sure as much of that list gets done as possible?

[Comic by Jorge Cham used in accordance with permissions found on the comic’s about page]