Alyssa's blog

Summer Work and Summer Rest

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Alyssa is an Autistic 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

At this point, summer is here, and with it, a lot of unstructured time. So, we can work, right? We've all got to-do lists a mile long, largely populated with everything we didn't get done during the semester. (Or over winter break. Or the semester before that.) It’s nice to think that we can finally clear out our to-do lists.

Not so fast. If you're like me, there's something on your list for this summer that was unfinished from your list last summer. There might even be two things. I still owe revisions on a piece about disability and fanfiction. I never actually finished the review on sleep monitoring technology. In my partial defense, my thesis focus has almost certainly changed and I’ve got two other papers written and out for review. Even so: I thought I was going to get more things, or different things, done than I actually did.

There are a few ways I could approach this reality. I could look for advice on how to make the best use of my unstructured time. And I do — scheduling and pomodoro-like techniques have helped me get more done during my working time. I could look at which things on my to-do list are actually a strong yes, as opposed to a "well, OK..." and saying "no" to what is neither exciting nor strictly necessary to my degree. My major professor told me it would be important to say no to things so I could focus and finish — this seems like a good way to trim my list of distractions.

After this trimming, the important bits on my academic list for this summer are:

  • Revise the three papers I owe revisions on. The two papers I got out during the academic year have joined the piece on disability in fanfiction, all of which need revisions.
  • Figure out what my dissertation research is actually going to be on. Right now, augmentative and alternative communication looks likely, but with brain computer interfaces. I’m not studying the same systems I use.
  • Finalize my committee, because I can’t take the next steps in my program until I do so.
  • Arrange (and possibly take) my comprehensive exams. Once I have a committee, I can do this, and depending on their availability, that will either happen over the summer or at the start of the fall semester.

Just as important as everything on the list above (maybe more important), I am making time for rest. Summer means some free time, if that is I can accept that I have it while staring down the list of things I could be working on.

This means:

  • Despite all pressures to the contrary, the 40-hour work week is, in fact, my maximum, not the minimum or the goal. (This is 40 hours total, not 40 hours on research, just to be clear. And if I need to use a pomodoro technique, the break periods count.)
  • Even if I haven't hit that 40 hour maximum Monday-Friday (and the past few weeks, I haven't), I'm still not working over the weekend. If I want to spend the weekend re-reading (well, starting to re-read) an absurdly long Pokemon fanfiction or playing video games, then I can do that. Being completely unproductive is precisely the point.
  • I am working evenings, since the math classes I'm teaching over the summer are evening classes, but that means I take the morning or the afternoon off on class days.
  • I'm getting enough sleep — and not just because I'll get more done rested. It’s the best thing for me to do as a human.
  • I'm trying not to feel guilty about being human and needing rest while I'm in graduate school. Yes, my disabilities mean I burn through energy faster in some environments, but if I need to cite a disability as a reason to only work a standard week, something has gone very wrong.

How are you going to take time to rest this summer?

[Comic by Jorge Cham and used in accordance with the instructions in the about page.]

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Disabled in Grad School: Speaking as an Authority

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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.

Of course, being seen as an authority figure isn't only a disability issue. For example, fellow GradHacker Alexandra wrote about cultivating authority as a female graduate student. Writing an article, she was told that she wrote with "too much authority." Did the reader know or assume her gender? (Someone who sees my name is likely to make the same assumption, and I doubt I'll fare any better if the reader knows I'm actually nonbinary.) Is it because of her feminist perspective? Is it the combination of the two? Looking back at my own teaching experiences, I suspect the combination. Sometimes my students know I'm autistic, and sometimes they don't. Most of them are under the incorrect impression that I am a woman. As a disabled grad student, though, I frequently run into this threshold issue, the one about my authority on my own experiences.

As a masters student teaching introductory college math, my authority was never really at issue. The department was good about backing up grad students when we had to tell our students, "No." And the topic was mathematics: everything I taught was a matter of fact, and I could prove it. I similarly didn't have difficulty demonstrating authority when I assisted in the electronics lab. My students’ circuits either worked or didn't, and my suggestions for how to fix them either worked or didn't.

There was some weirdness, however, about my writing on index cards when I couldn't speak. Though my knowledge on circuits was still a given, my students questioned the idea that being temporarily unable to speak could be normal or okay. How could it not be a big deal for me to need augmentative and alternative communication (AAC)? And that's the pattern I've run into. It's talking about disability, that thing where I actually have lived experience, where my knowledge is more likely to be questioned. Maybe it’s because I’m questioning the authority of what ‘everyone’ knows.

It's a pattern. Autism experts have been arguing that autistic people have a biased view of autism for as long as we've been writing about our experiences. On one hand, this is literally true. Everyone has biases about everything. And I'll be honest: yes, some of my autism-related writing, as researched as it is, is also activist: I'm highlighting issues that many professionals might like to ignore in favor of teaching us to act more normatively. How are Autistic people who are also Queer erased? What about AAC for people who technically could look more ‘normal’ by speaking instead? On the other hand, why is it that only our biases are called that? Pushing for indistinguishability as the primary goal is also a bias.

When I went and reviewed work about (and mostly by) Autistic adults who use AAC and can speak in order to argue that this is 1) a thing; 2) helpful; and 3) to be encouraged, I wrote like an outside expert to the extent that I could. That seemed like the best way to show that I wasn't writing about just my own experiences (see the chapter I wrote last summer - the book is out now). If there's even a whiff of that, and I'm saying something that isn't the usual practice or theory, I can expect to be reminded that "If you've met one autistic person, you've met one autistic person." Which, again, is literally true. So is, "If you've met or read writing by a few hundred autistic people, you've met or read writing by a few hundred autistic people." Guess which category I'm actually in.

Now, this obviously isn't something that happens 100 percent of the time. My major professor and my supervisor for my autism and AAC project both think that my autistic perspective on autism-related issues is valuable, because it gives me insights they can't have. There exist people who will consider lived experience to be a source of authority, rather than a detriment to it. Those are the people I try to work with, whenever possible.

[Image by Flickr user Jonathan, under a Creative Commons License.]

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Disabled in Grad School: Speaking as an Authority

Disabled in Grad School: Flexibility

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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.

In grad school, students tend to have fairly flexible schedules, which can be both good and bad. For example, it can mean we have more time to get ourselves to conferences, which is nice. However, it's not unusual for graduate students to work (or at least be at work) more than 40 hours per week. That's neither efficient nor particularly sustainable.

Getting into disability-related issues, there are even more reasons that a flexible schedule can be both good and bad.

Advantage: If something goes wrong, I can probably just go home. I'm autistic, and I've got sensory processing issues. If there is construction going on next to my lab, I can't be there. I really, really can't. Thankfully, no one's going to argue if I go home early, as long as I get my work done when it needs to be done.

Disadvantage: That flexibility means there's less pressure to prevent future issues. I'm still going to do my best to avoid problems before they happen. Sure, I can go home if there's construction going on next to my lab. I can go home if there's explosion testing downstairs from the classroom where I'm teaching. Sometimes (not always), I can even get out before I'm completely fried. Then I'll get work done at home. This means, however, other people aren't seeing the full effects of whatever caused my problem, and they may not fully understand just how important it is to not expose me to inaccessible environments in the first place. They also may help me avoid the inaccessible environment rather than making it more accessible to me.

Advantage: If I can get the work done in shorter bursts, that's OK. No one really checks which hours we're working, usually. If I can maintain my focus for a few hours and get a lot done in that time and then rest, that's great! Being efficient with the time I spend working and therefore spending less time working overall is basically how I manage graduate school.

Disadvantage: There's less structure and therefore fewer checks on my executive dysfunction. Putting me in a situation where the easiest thing for me to do is work increases the likelihood that I'll get work done. So, stick me in a library where I don't have internet access for a couple hours between classes, and my homework will get done. (This is something that actually helped me when I studied in Tianjin.) Without this sort of structure, maintaining my focus for a few good hours is hard. It's probably hard for all graduate students, whether or not we also have executive functioning issues. I do, though, so if you don't, multiply your difficulties staying on task by needing several tries to make tea (which is a task they're apparently looking at as a measure of executive functioning now. Oops!) In any case, without classes to structure my day or deadlines to give me adrenaline-fueled bursts of good focus, I could be in trouble.

How has flexibility in your schedule made your life easier? Harder?

[Image courtesy of Raw Pixel under a Creative Commons license]

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Disabled in Grad School: Autism Month

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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.]

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Dr. Hawking’s Legacy and Disability in Grad School

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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.]

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Disabled in Grad School: How 'Out" Do I Need to Be

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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]

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Disabled in Grad School: <br>How 'Out' Do I Need to Be
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Disabled in Grad School: Mentoring

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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.]

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Disabled in Grad School: (How) Do I Tell My Students?

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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.]

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I Found a Gap in the Lit, Now What?

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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.]

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Disabled in Grad School: I, Too, Dread the Accommodations Talk

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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.]

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