Making your tweets accessible

I am certainly not some kind of expert on digital accessibility, but I spend a lot of time on Twitter and would like to think I have picked up a fair amount of information over the years about how to make sure my tweets can reach as many people as possible. There are fantastic disabled activists all over Twitter from whom I have learned these things, and although I can’t remember sources for each of the tips I am going to put below, credit definitely goes to disability Twitter in general for the fact that I know any of this stuff in the first place. (If you happen to know that certain tips below originated from a specific person or organization, please tell me so I can credit them!)

While I do often see these points made in tweet format, and try to retweet every time I see them, I do not know of a single consolidated document that compiles all of this into one place… so, here you go! In no particular order:

1. Caption your images! There are lots of guides out there on how to use the embedded image description feature – and cheers to Twitter for finally making that an option – but true best practice is to write an image description into the body of a tweet. This is because not everyone who needs image descriptions uses a screen reader that picks up the embedded information. Including a description in the tweet itself – or an additional threaded tweet, if there’s not enough room in the original – makes it accessible to more of your followers. Here’s an example of how to put in the body of a tweet:

example of image description

Image description: screenshot of an April 19th Tweet from username “homo qui vixit awareness month @endeverstar” that reads “GOOD MORN FRENS / image: close up of black cat staring at camera” above said image.

I am not yet a a pro at the best way to phrase image descriptions, but this site gives some advice on that what information to include.

2. Provide line breaks when using the majority of any given tweet’s now-280 characters, to add sufficient blank space around your words. This helps some people with reading-related disabilities take in your content. For example (please excuse the random special interest TV show content, haha):

example of line break better

Image description: screenshot of an April 17th Tweet from username “homo qui vixit awareness month @endeverstar” that reads, “i like to think that the same way brennan is really good at the other-cultures’ social skills that she was able to learn explicitly through anthropology, [line break] she is actually really good at recognizing people’s faces because she was able to learn explicitly through anthropology”

3. Capitalize each word in longer hashtags so that screen readers are more likely to parse it out correctly rather than pronouncing it all as a jumble or acronym. For example, write “#ActuallyAutistic” instead of “#actuallyautistic”.

4. When you want to retweet something made up of an arrangement of punctuation or emoji that form a larger image, quote tweet it with a description of the overall content – otherwise it probably won’t make sense to people using screenreaders. Think bunnies-holding-signs, as in the below screenshot:

example of quoting punctuation art anon

Image description: a December 12, 2018 tweet with username and logo blacked out for privacy. The main tweet content says “Bunny holding up a sign that says please be inclusive of aces and aros” while the quoted tweet, also with username blacked out, displays the sign described.

5. Either don’t post starkly flashing/flickering gifs and videos or make them easily avoidable by giving an epilepsy warning. This can help your followers with seizure disorders.

6. Either don’t post videos/audio that have sudden very loud sounds or make them easily avoidable by giving a warning. This can help your followers with sensory processing issues and/or PTSD.

7. Use emoji thoughtfully. Overuse (such as including more than a couple in your display name) can get really annoying for people using screen readers, and some autistic/similarly neurodivergent people have difficulty understanding/remembering the meaning or subtext that various face emoji have come to represent. For example, I know very little about the implications of the following range of happy-ish faces.

example face emoji

Image description: a line of 21 yellow face emoji, each a different expression.

If you do use these emoji, evaluate whether the meaning of your content is dependent upon them – can you add the intent in text too so that more of us will understand?

8. For cognitive accessibility, think about how you’re expressing your thoughts. Decreasing the amount you use acronyms, unexplained jargon, and idioms can help those of us with intellectual and/or developmental disabilities understand what you’re trying to convey. We also might not easily pick up on sarcasm, so putting “(sarcasm)” or “/s” at the end of a tweet can make it easier for us to understand your meaning.

9. Give content warnings for common triggers! This helps trauma survivors as well as some other disabled people prepare for and/or avoid topics that could prompt flashbacks or other harmful symptoms. This is not a trivial matter of trying to make everyone perfectly comfortable, it’s truly an accessibility concern that deserves your attention. Any given disabled person’s triggers might be so specific that we can’t warn for all of them, but I hope you’ll consider trying to remember to give warnings for some of the most common triggers listed below:

Abuse/assault

Death

Dental

Eating disorder triggers (including specific weights/BMIs/clothing sizes/calorie counts)

Eugenics

Filicide

Fire

Gore

Holocaust/Nazis

Institutionalization

Medical trauma

Oppressions, including everything from hate crimes to oppressive language (such as slurs and derogatory use of identity descriptors)

Self harm

Substance use

Suicide

…that’s a lot of stuff! So now is a good time to discuss: we probably can’t make our Twitter feeds perfectly accessible at all times, especially if we have neurodivergences that impact our abilities. This goes for content warnings plus every other recommendation I make in this post. But in my opinion, that shouldn’t be a reason to just not even TRY to do our best. I know very well that I for one do not always follow these recommendations, whether out of completely forgetting or out of lack of spoons or time constraints or et cetera. But it’s a disability justice issue, and I hope everyone will consider giving their best effort to it. Your disabled followers deserve to engage with your content as much as your abled followers do, and I hope you’ll try to do whatever you can to make that possible.

So, how do you format content warnings? This is a common structure:

“CW [list topics]///

[a couple of line breaks]

[content]”

“TW” (trigger warning) and “CN” (content note) are interchangeable with “CW”.

You might have a follower at some point ask if you can add content warnings for uncommon triggers specific to their own disabilities. In my experience the most helpful way to respond is to take your best honest guess about whether you’ll remember, and assure the person that you won’t hold it against them if you fail and they unfollow (or if they want to unfollow immediately based on your estimate of whether you’ll be able to warn adequately for them).

10. When you link to outside content such as articles or YouTube videos, include information about accessibility in the tweet so that disabled people know whether it’s even worth clicking. Tell your followers whether there are captions on videos and transcripts for podcasts, give content warnings for subjects handled in the linked content, et cetera.

Okay, those are my top tips – do you have more? Please comment below, I’d love to hear about them!

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Requesting and using accommodations

A couple of weeks ago I got to go to a writers’ conference that happened to be in my city this year. A local nonprofit offered scholarships to low income writers, so I decided to take them up on it. I was impressed by their accessibility during the registration process – their website had a very thorough information page and things like a quiet room were already planned for. But I had to decide: should I request additional accommodations?

The main thing that came to mind that might help me enjoy the conference more was live captions, but I had never used those before. I always use captions for watching TV, because it eases the demands on my not-so-effective auditory processing, but I’d just never had the opportunity to maybe get that need met for a live event. After lots of imposter-syndrome-management and reassurance from friends, I decided to indeed ask for captions for the panels I planned to go to.

They arranged for a captioner, but an unfortunate disappointment was that they didn’t project the captions for everyone to see! Statistically there were probably at least a few other people who could have benefitted from it but that didn’t ask for captions for themselves. So my captioner streamed their typing to an iPad for me personally to hold and watch throughout the panels. That means anyone else in the audiences with auditory processing issues, d/Deaf and hard of hearing folks, English language learners, and others who might have benefitted missed out. Or from another angle, the conference missed out on an opportunity to more effectively engage as many writers as possible.

There were a few other accessibility problems I noticed (and I think anyone following the wonderful @DisDeafUprising during the conference learned about some of the other barriers people faced throughout the weekend – thanks to them for their presence and solidarity). For me, the time between panels was just not workable. Fifteen minutes is not enough time for me to find the gender neutral bathroom and hike across the convention center (let alone stop by the quiet room or stand in line for coffee or just breathe), and it is definitely not enough time for my captioner to hike across the convention center and then get equipment set up (let alone take a break of their own). The effect was that we left each panel before the Q&A even started, and I wasn’t able to connect with presenters I wanted to meet at the end.

The other issue that affected me and my captioner was overcrowding. I know that it’s nearly impossible to predict how big of a room will be needed for any given panel, but for accessibility (not to mention probably fire codes) there should be someone at the door of every room of a conference turning people away once all the seats are full. This can be a bummer; I’ve been at cons where I had to miss a session I was interested in because not everyone could fit in the room, but disabled people need to be able to navigate through aisles throughout the presentation. Panic attacks, incontinence, IBD, sensory overload, and many other conditions could lead to an urgent need to leave the room. Personally, I got trapped in a session that I couldn’t even slightly follow because 1) the outlet didn’t work, so no captions – already a problem – and 2) what I could make out of the content was seriously cognitively inaccessible. So I just sat there stuck and not taking anything in. Another problem was that although the organizers hired a captioner, they didn’t mark out seats next to an outlet as reserved for disabled folks – so if my captioner and I didn’t arrive early to every session we might not get the spot we needed.

All that said, am I glad I went – and asked for captions? Yes! Even with the issues the organizers didn’t plan for, the fact that I got any captioning at all (and had access to a quiet room and etc) did help me focus and understand the material being discussed, managing to last the weekend without a meltdown. If you’re an event organizer – or an abled attendee who can use your privilege to advocate for accessibility – please make sure there is a way for attendees to request live captioning (projected for everyone to see!), ASL interpreters, and other accessibility measures you’re not already accounting for as baseline universal design. For additional recommendations, see the handout my student group and advisor developed for a presentation we gave last year on making activist spaces more accessible. And if you’re disabled – ask for any accommodations you think will help you! Your access needs are valid, whether they’re common or not, and you have a right to request the appropriate supports. (Of course other disabled people in the same space may have conflicting access needs, but that’s a whole other blog post.) You deserve to participate fully in events and spaces you’re part of, and while I know it’s exhausting to have to self-advocate all the time to get your access needs met, in my experience it can definitely be worth it.

I’d love to hear from readers about the first time you got to use an accommodation that helped you, or experiences asking for accommodations ! Please feel free to leave comments below.

 

Autism Acceptance

This first week of Autism Acceptance Month, a stranger in a restaurant who saw me communicating in sign language asked if they could pray for me – “your hearing or voice or whichever”. I got myself out of the conversation fairly politely albeit awkwardly (shoutout to friend Jessi who interpreted my stumbling response), but looking back on it now, I kind of wish I had just been like… what the fuck?

I do not need a god to make it easier for me to speak. What I need is for speaking people to be more patient while I type. Ideally more speaking people would bother to learn some basic sign, too. And they wouldn’t interrupt my conversations in public to foist religious healing upon me. I do not feel like my voice is sick or broken, it just does not work the same way most other people’s voices do, and that’s okay. My whole life people have fixated on making my speech more normative, when all I really needed was for them to say it’s okay for me to type and sign instead.

This sentiment about communication is symbolic of my feelings about being autistic overall, and I am not the only one who feels this way. Being autistic does not mean my brain is a pile of puzzle pieces. I am not Humpty Dumpty, no vaccine made me fall, I do not need to be put back together. No, I need to live in a world that accepts me for who I have always been, and that gives me the supports I need to do things in whatever way works best for me at any given moment. That means people need to respect all my communication methods as well as other accommodations I need to help with sensory issues and other impairments.

Allistics should also be respectful my priorities and preferences, at least to the extent they would respect those of an abled person, instead of trying to fit their own goals and values onto my life. I don’t care what other people think – it is not my goal to act less obviously autistic, appear less noticeably trans, or hide my poverty like a dirty secret. After years of masking and passing and fitting in to the detriment of my health, I now choose these dynamics more carefully (for example, as a means to safety). I know now that no matter how uncomfortable my identities and their observable manifestations make more privileged people around me, I shouldn’t have to change myself for their convenience. That understanding is thanks to the work of generations of self-advocates before me (for example, folks at ASAN) who have pushed for acceptance, not just “awareness”, of neurodivergences.

Being autistic is not always fun or even manageable – both for reasons explicable by the social model of disability (see this academic article or this more cognitively accessible description if you’re not familiar) as well as reasons that perhaps don’t fit that model. But that doesn’t mean I wish someone (doctors, gods, doctors who think they’re gods, whoever) would “cure” me! I wouldn’t be me if I weren’t autistic. My thought patterns would be strange and unfamiliar, and I’d miss the joys of stimming, special interests, and synaesthesia. I wouldn’t even have the same things to say if my relationship to speech was more typical. So no – please don’t pray for me. And please, please, please don’t spend the rest of this month going around somberly warning people about the “tragedy” or “epidemic” you think autism is. After years and years of work to accept myself, I am proud to be autistic. It’s long past time for the rest of the world to accept us too.

How I manage bipolar disorder

Content warnings: mention of self harm and suicidality

You may know from earlier blog entries that I have Bipolar 2. This means I never get fully manic, but have episodes of depression, hypomania, and mixed states. It is this condition that I perhaps consider the most disabling of my diagnoses, I think mostly because of the gap between the social model and these impairments. I’m pretty sure there’s no combination of supports and decreased access barriers that could fully prevent me from having bipolar episodes through the rest of my life. While I am not reliably stable enough that you should consider my self-care a perfect way to prevent bipolar episodes, I have picked up some useful skills over the years that do keep me more stable than I used to be. I will tell you about some of those now in case they are helpful.

Sleep: I require extra sleep in order to function, usually ten hours a night. What is even more important than the amount is that I keep to a strict schedule, especially for bedtime. Getting too little sleep is a risk for hypomania, and getting too much is a warning sign I might be entering a depression.

Walks outdoors: Please don’t read this as the infamous “have you tried exercise?”, because it’s only a small part of my self care and not everybody finds it helpful. But it does seem for me that going for a walk every morning helps me stay sane. I am not sure whether it has more to do with moving my body, soaking up vitamin D, and/or the reassurance of routine itself that is useful. Oh, and it is a good time to listen to wizard rock, a special interest thing for me – I think engaging in special interest stuff can be a positive thing for many autistic people’s mental health.

Meds: I love my meds. I especially find antipsychotics useful for my brain, but of course “your mileage may vary”. I am usually diligent about taking pills – my emotional support animal and I have a system. I’m not allowed to feed her until I’m taking my meds – and, conveniently, she gets hungry twice a day when my doses are scheduled. Thus I can’t stall too long or skip them entirely because she’ll cause havoc until I comply with her dinner plans. Unfortunately, I am liable to skip a pill or two when I’m hypomanic, under the illusion it will keep me feeling good longer. This is a bad idea. This is a classic feature of bipolar disorder though – the brain’s wheedling that skipping meds is okay.

Moderating stress and outside commitments: this isn’t doable for everyone – if employment is your only chance of income or you have dependents, there may be stressors you just can’t get out of. For me, trying to hold a job was a huge stress (not least because it involved a lot of masking my autistic traits), and I feel supremely lucky to have gotten on SSDI. It’s also important for me to only take a class or two at a time and to be wary of adding any other new commitments to my life. Certainly having some regular activities can be nice structure/routine, but my history clearly demonstrates that “normal” amounts of work/commitments/stress/etc put me at huge risk for increased mood episodes.

Community: Everyone has different needs around amount and type of social interaction, but personally I’ve found I do benefit from some interaction with people I can relate to. This is carefully curated, however, given my autistic traits. For offline interactions, I do best when I can build friendships by seeing someone in the same time/place/activity every week. This makes the hangout much less stressful and I am better able to connect than I am when coping with unpredictable elements. I am lucky to have friends who are amenable to this accommodation. Besides that, most of my social life is online, and that suits me well. Not only is the method of communication easier than the speech people typically expect in person, but the reach of the Internet allows me to connect with people who have similar experiences as me. Through Twitter I feel like part of a larger community of queer and disabled people, and it’s good for my brain to feel like I have a place in the world.

Supports for co-occurring conditions + masking less: My bipolar episodes seem less frequent and milder over the last year or two, and I think one of the changes that has affected this is the fact that I have been able to incorporate more disability supports into my life and decrease the amount I mask my neurodivergencies. (I’m placing these components together because for me they both have to do with claiming my disabled identity, decreasing shame, and asserting my rights.) As I use AAC, let myself stim more, utilize academic accommodations, explore executive function supports, structure my life to avoid PTSD triggers, and try to find environments where it is safe to be noticeably disabled, I experience less distress. This appears to be decreasing my vulnerability to bipolar episodes. (It should be noted that it’s not safe to be noticeably disabled in many environments, especially for multiply marginalized people, so not everyone is able to make these kind of changes to their life.)

Symptom tracking: I developed a system for monitoring some of my warning signs and significant symptoms that takes about a minute a day and results in charts my providers and I can look over to discuss how I’m doing. This can help identify potential episodes early on, giving me a chance to intervene before things get too bad. The items that you choose to monitor should really vary from person to person, but the items I track are: mood on a scale of 1-10 (morning and evening), sleep, anxiety, irritability, intrusive thoughts, sensory overwhelm, self harm, suicidality, whether I took my meds properly, and whether I cancelled plans/missed commitments.

Therapy/group therapy: I’m not someone that thinks disabled people have to be “compliant” with treatment a doctor dictates in order to successfully manage our conditions, but I’ve often gotten something out of showing up for my appointments. It’s a huge cost benefit analysis, because treatment can so easily be harmful to trans and autistic people, but given my brain I kind of feel like I’ve had no choice but to risk the bullshit in order to try to glean the potential benefits. I’m lucky that my current therapist is decent. I’m not able to see him often enough for deep trauma work or anything, but he serves as a sort of check in/case management/sounding board type person that is still useful to me.

Okay, those are the major components that come to mind, but I’ll note a few extra topics that I’ve found useful at various points in case you want to look into them more: vitamins/supplements, connecting to my spirituality, peer-run support groups, dietary changes (this one’s complex for me due to eating disorder, but still worth mentioning), journaling, creative writing, engaging in special interests, and routines.

Do you have tips from managing your own mood disorder you want to share? Please comment!

We deserve access to AAC!

Para leer este artículo en español, pulse here.

Let’s talk about the impact of pushing speech only on children with speech problems. I was in speech therapy until I was eleven. I don’t remember everything about it, but I think I was mostly there because I said a subset of consonants differently than typical kids. I am not actually clear on whether people around me were really having a hard time understanding me, but looking back my impression is that my speech was not unintelligible, it was just different. So I have to wonder, were the years spent training me to talk “better” worth it?

Because, here’s the thing. The message I came away with, all those years later, was that the way I naturally did things was bad and wrong. Given, this message was coming across in more areas of my autistic life than just speech, but speech was certainly one reason I felt like who I was wasn’t okay. That has had a lasting impact on my self esteem and mental health. I was being given rewards for pronouncing things right, and drills and homework when I did it wrong. Meanwhile, I am not sure it ever occurred to anybody to actually ask me if I wanted to learn to pronounce things differently, or whether I was comfortable with the way I sounded. I know I did not enjoy my speech homework: reading aloud at night. Mind you, reading and books and words and letters were my special interest, but I did not see the point of reading out loud if I could enjoy my book twice as fast by reading silently. I do not remember expressing any of this, I needed love and approval too much to risk voicing my internal dissent as often as I felt it.

It also did not seem to occur to anybody that speech might be even more difficult for me than was represented in my actual output, and that it was just getting more and more exhausting the more I tried to say things the way they wanted me to. It’s only now, as an adult, that having access to AAC is showing me how different my early life could have been if that struggle had been better recognized. With AAC it’s like a giant weight I hadn’t fully realized was there has been lifted. For example, in sign language I find myself outgoing and energized by social interaction, the complete opposite of my other experiences socializing. Using dedicated high tech AAC on a day to day basis tangibly improves my life as I can express myself more fully with less difficulty and I have more energy to spend on other tasks. So why didn’t anyone try me out on these options when I was in speech therapy?

Not being diagnosed autistic at the time perhaps has something to do with this, but I believe it shouldn’t. I think everyone in speech therapy for any reason should be considered candidates for AAC – not in the sense that the therapist thinks about it for a few seconds and then checks a box saying it’s been considered but isn’t necessary, but in the sense that it is presented to the communicator early on as an option they’re welcome to explore if they think it would be helpful. Please note that I said “presented to the communicator”, not “presented to the family”. Caregivers don’t have the right to make decisions on behalf of disabled people about how we communicate; every human being has a right to determine that for themselves. It’s caregivers’ and professionals’ job to provide as many options as possible. This statement is not dependent upon perceivable verbal ability. People with any kind of struggle with speech, language, or communication – no matter how adequate or promising you think their speech seems to be – might possibly find AAC easier, more effective, or otherwise preferable for expressing themselves fully and without undue hardship.

Presenting atypical communicators with these options and determining whether they want to work on speech, pursue AAC, or both is going to look different for different people. For an apparently verbal autistic kid like me with pronunciation problems but demonstrated ability to understand and respond to questions about preferences, professionals could initiate a verbal conversation about the topic accompanied by demonstrations of some AAC methods and directly ask what the person wants to focus on. For nonverbal kids who haven’t yet been given supports necessary to demonstrate their ability to understand questions and communicate their preferences, this can be approached differently. Pair speech with sign language and/or picture boards early and consistently, and wait to see which method of communication the child attempts to learn. If the AAC methods have been presented as equally favorable as speech – if no one is coercing the child into focusing on one of the methods over the other – the choice of communication method(s) the child begins to use is in and of itself an expression of their needs and preferences. In either of these scenarios, if a communicator chooses to use AAC, professionals’ and caregivers’ job is to make sure we get quality tools for the method(s) we show interest in (symbol books, letterboards, devices, etc), to model consistently and intensively so we can learn to use those tools comprehensively, and to actively validate our communication methods as equally valuable as speech.

Making sure we have the chance to try AAC if we want can have such a positive impact on autistic people. For one thing, it’s a chance to give us agency over our lives, something too often stolen from disabled people. It sends the message that there is no one right way to communicate, that any method or pronunciation or word order is effective communication if it’s getting the intended meaning across. This could do a lot for the self esteem of those of us who communicate atypically. And finally, for those of us who do end up finding AAC more comfortable than speech, it’s opening a door to a priceless tool that can improve our quality of life drastically. Please never assume, based on what you see from the outside, that we don’t need what’s behind that door. Give us the chance to decide that for ourselves.

 

Credit to my dear friend Saoirse for being a second set of eyes on this post.

“I am from”: a poem

I don’t plan to normally post poetry on here, but this piece I did for a recent school assignment contains themes highly relevant to this blog, so I decided I will share it. (I used to write poetry all the time; but it’s not really currently my thing. Not sure why.)

Content warnings: ableism, heterosexism, cissexism, involuntary treatment (including restraints), abuse, filicide, vague Holocaust reference, vague self-harm reference

 

i am from altitudes, latitudes, longitudes

towns and cities, forests and deserts

houses and apartments and tents and sleeping bags

i am from values – a childhood refusal of meat and an adolescent refusal of school

i am from habits – ink, fibers, fidgets, scars

 

but mostly, i am from people

i am from people who have been stigmatized

institutionalized

fetishized, pathologized

disenfranchised

sterilized, experimented on, exterminated

 

i am from people who have been kicked out – young rain, grimy streets

locked up, restrained – screaming the pierce of unwanted needles

policed – our clothes and bedrooms

impoverished – mountains of paperwork just to survive

shocked – pain meant to train us

to act less queer

and more neurotypical

sickened – empty pill bottles, turned away from the ER

misgendered – the hollow feeling of unseen selves

cis doctors can deem ineligible for transition

deadnamed – IDs betraying unasked-for history

the Ms and Fs written in stone

ignored – eyes skip over us, accommodations unmet

assumed incompetent – the fake syrup of “baby talk”

left to die – nursing homes don’t care to set us free

abused, assaulted, murdered – and our caregivers get sympathy

for how hard we must be

to deal with

 

all this, and my people

have chained themselves to buses

crawled up the steps of the capitol

testified in congress

occupied senate offices until dragged out of our wheelchairs

resisted arrest

voted where allowed

called senators on text relay

sued the state

 

my people have crowdfunded each other’s surgeries

bound each other’s chests and zipped each other’s dresses

taught each other, parentless, to apply lipstick and tie ties

given advice, doctorless, how to choose a mobility device

and how to use the apps that amplify our voice

we’ve taken in our unhoused youth

gotten married

ordained our own clergy

danced and performed and marched our true selves

crashed the conferences where professionals like to talk about us without us

designed the research no one else is doing to increase our quality of life

taught our teachers what are actually our real names

 

my people defy norms

loud – rainbows and glitter and flags

proud – rocking and flapping and drooling

our existence, in this world, is indeed resistance

 

so i am from everywhere my people are oppressed

and i am from everywhere we fight back

 

Credit: I don’t know who came up with the phrase itself, but I found the quote I referred to (“my existence is resistance”) on one of my favorite shirts to wear by Model Deviance Designs – go support them!

Thanks for reading.

Day in the life of a part-time AAC user

It was hard to pick a single day to attempt this on, because my days all tend to be very different from one another rather than having any one “typical”, but here is my December 6, 2018…

7:30am: It’s time to feed my cat. I know this routine. “Your turn,” I tell her. It is an echo, something I can say with my mouth voice most days. Echoes are usually easier than spontaneous speech (here’s a video about echolalia if you’re unfamiliar), and talking to my emotional support animal is usually easier than speaking to other people.

7:45am: Taking the trash bag out, I see a neighbor I recognize in the lobby, but feel no pressure to speak. My neighbors know that I don’t. Well, most of them are under the impression that I never speak at all, an idea I deliberately allowed to build up. It is just so much easier than needing to justify using AAC part-time. Unfortunately, knowing I use AAC means most of them ignore me most of the time. It is a little sad that due to my communication method people here do not get to know me, but still I feel much more comfortable here than at the last apartment I lived at, where every elevator ride necessitated spoken conversation.

8:00am: The cat, now, is very awkwardly trying to arrange herself on my lap. Getting impatient, I say, “what doing?”. She doesn’t know that sentence was supposed to be more fleshed out. That’s why I don’t mind talking to her so much.

9:30am: On the train ride I start this blog post, using my symbols app to compose sentences and then copy and pasting into Google Docs. Somebody hovers just behind my seat for a weirdly long pause as I work, and I have to wonder whether they are staring at me.

10:15am: I have a folder just for phrases I need for my weekly pharmacy trip – because the exchange is always so predictable, it is easy to make a complete script in advance. The staff there are familiar enough with me that they do not blink when I show up using whichever communication method I’m favoring that day. However, I find myself wishing that somebody there knew sign language. It would be a great situation to be able to just say what I need quickly, without having to balance my device against my stomach while juggling a bag of prescriptions.

10:30am: I stop by my clinic’s referral office to see if they can call the local specialist I’m trying to go see. I adore text relay, but it’s admittedly much quicker to have someone else make this kind of phone call than it is to attempt it myself. The person I find in the office says hello in response to my greeting but then goes back to working on their computer while I type my next message. At least they respond when I do finish rather than ignoring me completely.

10:45am: The receptionist at my therapist’s office seems to think I am ignoring them when they call me to the desk and I start typing. They’re relatively new here, but they have met me before – that time, they didn’t acknowledge my AAC voice at all. (To be fair, I am really bad at judging whether my volume is too loud or too soft, and people seem hesitant to ask me to change it, so it’s possible they really just didn’t hear me.) This time, though the interaction is successful enough to check me in, they misgender me in the process. The app I use only has one voice option that has a slightly between-typical-binary-voices pitch, but sadly that’s not enough to suggest to the average cis person I might be trans.

11:00am: My therapist is very familiar with my tendency to switch communication methods back and forth within the same conversation, so the whole fifty minutes my speech is interspersed with typing from my QWERTY app. I notice, amused, that some stims are easier with one method versus the other – use my communication device, and it’s easier to suck on my chew necklace, use speech, and it’s easier to flap. I do sign “sorry” at one point automatically before remembering he wouldn’t understand it.

12:00pm: I stop back by the referrals office to see if the staff person I was looking for has returned yet, and indeed they’re there to take my questions via my communication device. Since first meeting them they haven’t commented or questioned that sometimes I speak and sometimes I don’t, but this time they do say, “wow, you type so fast.” I’m tempted to reply “you speak so fast”, but, whatever.

1:30pm: A walk, train ride, and trip through IKEA later, I am sensorily overwhelmed and not very languagey. Hands too full to type, I ask the marketplace cashier, “find marzipan?” They ask me to repeat myself. Sadly, they’re out, but I get through the rest of the transaction wordless.

…my AAC-related life basically ended there for the day, because I proceeded to enter sensory overwhelm plus then got an upsetting email. I barely got myself home in time to crash. I didn’t have any more face to face interactions that day, but friends were incredibly helpful via texting and twitter in getting me through the crash. To be honest, that kind of communication is essentially AAC as well. It’s not called that because abled people use it, but it’s totally just a method of communicating that doesn’t use speech, so I think it counts.

Well, nothing like trying to write a “day in the life” post related to disability and having the day end up derailed halfway through by disability (or I suppose more accurately, by ableism/inaccessibility). But hopefully this post gave you, um, six hours’ worth of insight into my life as a part-time AAC user. As you can see, most days are a weird mix of increased access due to this assistive tool and simultaneously decreased access due to ableism. One of the most important aspects my communicative life is flexibility: I really value situations where I can switch between communication methods whenever needed. So one of the morals of this story is how crucial it is for me to have people and places that honor my communication needs and choices. That means training for professionals, more kindness from strangers/acquaintances, and relationships where I feel safe to unmask. Where I feel free to speak, if I’d like, the way I would to my cat. And where AAC is understood as a not a sign of failure or a lack of something to say but as a positive tool that helps me say all the somethings I want.