What is it like to be a disabled academic? Tiring in a thousand tiny ways; you need to do invisible, unrewarded setup before every interaction, and the purpose of this blog post is to make some of that setup less-invisible. Since people found my conference access request email helpful, I'm presenting another one here -- and unpacking/explaining the function of each section of the email as I go. 

(Note: this is a long blog post; it's very first-drafty. If you want to help me edit/revise this into a more polished piece, I'd love input.)

Hi there. I'm an American PhD candidate at Purdue University registered for both the FIE 2014 conference and 2 workshops (receipts #XXXX for registration and #YYYYfor workshops).

Function: "Hey, let me prove to you that I'm a paying customer. Pay attention."

Further background: This email was written for the FIE conference, the most prestigious research gathering in my field of Engineering Education. This is an important conference for me; since I graduate next spring, this is my biggest opportunity to share my dissertation work before it's done, and to talk with people about job opportunities after graduation. I also have 4 papers in as first-author, which is a big deal -- for those unfamiliar with academia, "first author" roughly translates to "project lead," and 4 papers would be a high count for a tenured faculty member -- so 4 first-author papers for someone who's still a student is pretty impressive.


The registration is under my legal name of "Mallory Chua" -- Mel is the name I'm widely known by and publish under.

Function: "Here's how you can find my records easily, because I operate professionally under a name other than my legal name."

I am deaf and require disability accommodations. I noted this on my registration form (with a "please contact me so we can discuss arrangements" message) several weeks ago. Since I haven't heard from anybody yet, I thought I'd start the ball rolling here, since the conference is in Spain and access to my usual methods of accommodation may be more complex than usual to arrange outside the USA.

Function: "I asked before, and haven't heard anything; I will now makes it harder to ignore me."

The fact that FIE is in Madrid this year is both wonderful (going to Spain!) and a complication for accessibility setup. I'm American, and the US has the Americans with Disabilities Act (ADA) which mandates accessibility for the disabled -- meaning that things like interpreters are widely available across the country, because they're frequently used. However, finding an American Sign Language interpreter in Spain? I have no idea how we're going to do that, so I'm getting started early -- the conference is in October, 3 months away.

At least Spain is a developed nation with some semblance of "disabled people, they can do things, and we have resources for them!" If I ever go to a conference in my family's home country of the Philippines, or another developing nation where the usual attitude towards disabled people is "we can't do anything for you, pitiful marginalized person -- pretend to be normal and/or go away," I don't know what I'll do. I'd probably fake being hearing (and miss most of the conference content while simultaneously being exhausted) or quietly decide not to go at all (and nobody will ever know why I didn't) -- these are the two options I used to choose between before I started going "wait, wait, access is a thing that I can ask for without being ostracized/ridiculed/seen as a not-serious researcher in my field, and I want to have it!"

Specifically, in addition to having notes/documentation in written form whenever they're available, I'd like to request in-person CART (realtime trancription) or an ASL (American Sign Language) interpreter for the duration of the conference, including evening networking events. If I had to pick only one, I would prefer the ASL interpreter as it's a more mobile/flexible option for conversations;

Function: "I realize you may be unfamiliar with this sort of request, so will concretely request exactly what I want to make it easier for you to give it to me, and easier for me to document my request-trail in case I need to push for this to happen."

Note that "unfamiliarity with this sort of request" is a chicken-and-egg problem. A lot of disabled people don't "make it this far" in their education, so higher ed is rarely set up to accommodate them... which makes it harder for them to get there. Since I'm one of the few deaf people to make it to a PhD (the average Deaf American adult reads at a 4th-grade level, whereas I write complicated research books), I'm often the first person of "my type" that institutions/colleagues have had to "deal with," and spend a nontrivial amount of my time helping both sides (me and them) adjust to that. On some level, we all teach our colleagues how to deal with us; we don't like morning meetings, or we do really well over email, or we use a Mac and can't install a certain piece of research software -- but I have Yet Another Thing to add atop this sort of stuff, which is that I can't hear -- and very few people I encounter know how to deal with that well.

Also, I don' t know the answers to "how do we help you?" either -- as a PhD student, I'm still learning what it means to do a PhD, so there's a lot I don't know about what I need to get through it! It's as if you'd never studied Italian, and then someone asks you -- in Italian -- "how do you learn Italian best?" Again, to some degree, this is true for all PhD students (we're still figuring out what helps us be good researchers), but whereas things like "how do I stay focused during the long, lonely days of dissertation writing?" are pretty common amongst researchers and can therefore be tackled via shared advice from classmates and advisors, my experiences of deafness aren't shared by a lot of people, so I'm figuring it out on my own -- and a lot of people don't realize how much extra time/energy that takes.

...as you know, networking conversations about research are a huge part of the value of any conference, especially one with such excellent and high-level research as FIE.

Function: "I compliment your conference on being awesome. Recall that conversations are a huge part of that awesomeness. I need access to them as well."

A lot of people forget that accessibility isn't just about being able to hear the lecture -- it's the informal conversations afterwards where people make sense of the content, build relationships, etc. that make you part of a community. And I miss out on that a lot.

I need accessibility services from 2pm on Wednesday, October 22 (the start of workshops; I am attending workshops 1B and 2B) through the end of the conference at 6pm on Saturday, October 25.

Function: more clear specifications on my needs, because places will typically try to provide you with as little access as possible to pass a minimum bar. I understand this -- it takes more resources to provide access -- but the message that sends is "we are frustrated that you are here; you are not welcome in this space, we are grudgingly letting you in, as minimally as you can, because we have to." Which is hardly hospitality.

I would be happy to connect you with my counselor at the Disability Resource Center if it would be helpful;

Function: trying to minimize the effort needed on both the conference's side and mine. Arranging these logistics -- and educating people as to what they are -- is a nontrivial amount of work. I'm tremendously grateful for places like the Disability Resource Center at Purdue, who take a lot of that time/emotional burden off me so I can focus on things like "writing the methods section of a paper for my advisor" (which is what I'm doing today). It's hard to focus on deep work when you don't know if something important ("can I have access to the services that make my career possible to pursue?") will be taken care of; nagging worries in the back of your mind are both draining and distracting. You could compare it to the instability of always being on a temp job (like some adjuncts) -- there's the constant stress of "will I have a job next year? I'd better be looking for work, ALWAYS" -- except in my case it's "will I be able to do my job next year?"

we did a very similar accessibility setup for the ASEE conference in Indianapolis last month with great success and could share the logistics/provider contact info with you. There were a total of 3 Deaf attendees, myself included, who benefited greatly from these accommodations.

Function: "This has been done before; this is a "normal" and "expected" thing to do, and it has a positive impact."

Okay, so maybe it's not "normal," to "expect" this yet, but it should be. Create the reality you want to live in, right? To a large degree, this is why the ADA (Americans with Disabilities Act) exists -- it sets a default expectation, and says "yes, you should ask for the help you need; you should expect people to accommodate you."

Because far too often, they don't. And I do not have the energy to argue with all of them. I'd rather spend my time and mental/emotional energy revolutionizing the way we redesign engineering curricula -- which is a huge, hard problem that I have a unique capacity to contribute to -- than to spend it struggling to understand the Q&A after my talk on redesigning engineering curricula, which is a burden Other People can lift from me. (There are plenty of "sucky things that come with being deaf" that other people can't lift from me -- I'm the only one who can deal with them, and I do. So when someone else can deal with it, OH PLEASE DO THAT.)

Ideally, everyone would accommodate people with disabilities without needing legislation to require them to do it. But... they don't. This may sound entitled to some readers, but I am tired of relying on the "goodness of everyone's heart" to be the thing that my career depends on. Besides, the same legislation often provides resources so the people who want to accommodate people with disabilities are able to do so.  Also, ideally, everyone would drive sober, care for their kids, and not randomly shoot strangers without needing legislation to require it... but they don't. Legislation doesn't mean nobody ever drives drunk, but it sets the expectation that you shouldn't, and provides a mechanism to help align society with that expectation.

Let me know how you want to arrange these details -- looking forward to hearing from you soon!

Function: "The ball's in your court. Do something. It's an expectation that you do."
We’re long overdue for an update on the Hacker School book. If you’re a Hacker Schooler who signed up for the first two rounds of data collection and analysis,
my apologies for falling off the radar. Turns out I’m terrible at scheduling logistics -- so I’m hiring a research assistant to help with that, and we’ll be rescheduling folks so we can get into the storytelling interviews we actually want to have. If you’ve signed up for the project in some way, you should expect an email by the end of July.

One of the biggest blockers has been a lack of training materials to jump-start interview sessions. What do interviews look like? How do you know what questions to ask? How do you analyze the stories your fellow Hacker Schoolers are telling? (How do we do any of this?)

Well, thanks to Hacker School alums Stacey and Stefanie, we now have a great demo interview. We’ll be using it as an example/training tool for analysis while I’m in NYC next week for my Hacker School residency. Instead of pair-programming with students like I usually do, I’ll be spending this residency with both local and remote Hacker School community members pair-analyzing and pair-interviewing to get the next round of data collection jump-started. We’ll run 2 full rounds of data collection/analysis as originally scheduled (July 21-August 17 and August 18-September 7) and get some stories out there.

(Thanks to Sumana Harihareswara for her project management ninjahood coaching/prodding, and the reminder that public updates are good. Sometimes it’s easy to forget the most basic things, but that’s why we have friends to remind us.)