Well, another poem I guess

I know I said I don’t really plan on posting poetry to this blog, but a dear friend asked me to write some, and the content is relevant – so, here you go!

people think i spoke for all those years
even correctly, for some of them.
so how can i explain
that it is only now i have a voice?
true, i eked out words here and there
that were right and true
paper, journals, signs, word processor, instant messenger, emails, texts…
i even spent days in silence –
perhaps a whiteboard note or two,
scratch paper for the barista (soy latte, 16 ounces) –
but i didn’t understand.
how can i tell you
whose brain is connected to your mouth
that my fingers are more sure than my lips?
and that now that i know myself
my words are strengthened, more confident, more proud?
to me, quieter than i wanted for all those years,
being able to press play feels like a privilege.
but what i wish for everyone
growing up unusual
is a human right:
words any way you want them
all the ways you want them
no explanation necessary
at all.
my words my ways
is a promise to myself
and a hope for everyone else atypical
in this world that doesn’t listen.
may we all have loud hands.

[The final line is a deliberate reference to ASAN’s “Loud Hands” anthology, please check it out.]

What it means to be institutionalized

Once again, it’s been ages since I wrote! Apologies. Here’s a tidbit, albeit not very long or well-edited:

Content warnings: institutionalization, self-harm

I tweeted a brief version of this while inpatient the other day, and judging from people’s reactions it’s not actually common knowledge that some of these things are the reality of being institutionalized. That is, if you’ve never been there, you might abstractly talk about deinstitutionalization, but… you don’t know what you’re talking about. No offense. So here is a list of some of the things I am not allowed to do for myself, or whenever I want, or at all – while inpatient. Reasons include “my own safety”, relevant items not allowed on the unit at all, staff convenience/availability, or a myriad of other excuses. Not all of these things will be applied to every institutionalized person, but I want to give you examples, because it generally portrays the key feature of every institution: an imbalance of power, where “caregivers” are in almost total control of the disabled people they supposedly help. This powerlessness contributes to the trauma of coerced treatment.

Please note that I’ve probably spent a total of under a year of my life hospitalized, so someone who has more extensive marginalization in this area may have had significantly worse experiences than me.

Things I wasn’t allowed to do for myself, whenever I want, or at all:

• watch TV
• turn on TV’s captions
• use computer/internet
• charge phone
• use phone
• wear jewelry
• do laundry
• choose clothing
• access my money
• access my personal belongings
• choose my stim toys
• choose my sensory aids (ear defenders, weighted blanket, etc)
• choose self-injurious stims
• choose toiletries
• get a haircut
• dye my hair
• put on nail polish
• shave
• clip my nails
• shower
• take a bath
• use the bathroom
• decide to take a PRN
• take meds
• cook
• microwave snack
• open fridge
• choose food
• eat
• talk to doctor
• talk to nurse
• talk to social worker
• talk to lawyer
• see my cat
• see my friends
• use tty/text relay/vrs
• communicate in sign language
• charge communication device
• use communication device
• go outside

… or choose to leave.

Joint blog post

Hi there,

Ack, how did I end up on an accidental hiatus? Sorry about that! I’ve been working on a ton of projects but not blogging, apparently.

BUT – my friend Alyssa and I recently collaborated with Hillary Goldtwait Fowles on a Q&A style blog post about AAC! Please go check that out in the midst of my lack of writing here.

One of the other things I’ve been working on is rebuilding my Etsy where I sell buttons, patches, and other crafts focused on disability, queerness, social justice, fandom, and general nerdity – if that’s of interest to you, please feel free to click that link too! I’d love to make things for you.

I’ll try to get back to writing on here soon, or at least updating you on my other projects. 😀 Thanks friends!

AAC for autistics 101: part two!

You can read Part 1 of this post here, focusing on assessing autistic people for AAC supports. This second part gives tips on interacting with those of us who already use AAC and helping advocate with us for communication rights.

Whatever AAC supports you and the autistic person have selected, it’s your job to model as constantly and thoroughly as you can! If the only input nonspeaking autistics are getting from people around us is speech, at best we are going to develop self esteem issues from the implicit message that our communication isn’t normal, or at worst we will never learn to use our AAC supports at all. Please teach our caregivers how to use our AAC supports so we are getting consistent input in a useful modality throughout the day and across every setting.

Along with modeling, please provide us with as much vocabulary as possible as early as possible! The AAC field has historically often fixated on teaching requesting, but every autistic person has the right to all communicative functions. This includes refusal! That is actually a really important thing to introduce along with other vocabulary for self-advocacy; being able to say no is important for our safety and self-determination. As another example, if you think we are not capable of commenting on preferences or sharing opinions, and thus don’t give us the vocabulary, you have made us automatically and ongoingly not capable of commenting on preferences or sharing opinions! And please make sure from the outset autistic communicators have vocabulary for talking about our special interests and favorite objects; we are more likely to want to learn our AAC method if we can use it for conversations that excite us.

As early or often as possible try to teach us how to customize our devices and add vocabulary for ourselves. Don’t see yourselves or our caregivers as the sole moderators of our access to communication. And don’t overstep your bounds in assessing how we use our devices. Many programs have a history or tracking feature that can help you analyze what words we’re using, but looking at this without our consent is a privacy violation.

Some other thoughts on working with AAC users… Never take away our device (or light tech supports)! They should always be within reach. I have had my device taken away and it is such a helpless feeling. Even if we are using our device for what seems to you to be non-communicative, for example echolalia or vocal stimming, and even if it’s getting really really annoying, we still deserve access. You probably sometimes sing along to the radio, which is essentially socially acceptable echolalia/vocal stimming, but no one tapes your mouth shut. Give us the same autonomy. The one exception to this is if the needed objects might get damaged, for example in a swimming pool. If this is the case try to get our consent before just taking it away, and have a backup like a small laminated communication board or at least a system for answering yes and no questions while in that environment.

Ask each AAC user directly how we prefer to interact. Some of us want communication partners to be silent and patient while we type, other people would appreciate you trying to guess the ends of our sentences so that it is less work for us than having to spell everything out. We might like a device set to speak each letter or word as we type it or we might want to compose messages silently and play the whole thought at the end. Some of us want to keep our screens private and express ourselves with speech generation, other people would rather you read along as we type. No matter what an AAC user prefers along these lines, use your relative position of power as a professional to teach peers and caregivers how to interact with us respectfully. Make sure we are invited to our own IEP meetings and other services planning meetings so we can express our own goals for our communication, and make sure people talk directly to us rather than to our caregivers and assistants. I have had doctors ask my support person questions about me while I was sitting right there, it’s really patronizing.

Another thing to consider is helping us use our AAC system to connect to other people and places, not just face to face. We may want to make phone calls – can we use text relay for that, or put our devices on speakerphone? Can our devices access emails and social media so that we can copy and paste the sentences we write using symbols directly into other apps? This is important not just for our social lives but also for self advocacy. For example, we might want to call a hotline to discuss our rights in benefits programs. We deserve to contact our senators and representatives about policies that affect us, and most autistic adults have the right to vote even if we are under guardianship. Think about whether our AAC supports will give us access to these activities that are part of living a full life.

Okay, that’s the text of the presentation I delivered to future SLPs! As I give more presentations like this I will probably refine and add and cut and edit, so maybe someday I’ll update this post, but for now this is a good summary of what I’d say to professionals fairly new to AAC for autistic people. Please feel free to pass it along to anyone you think might be interested!

Are you an autistic who uses AAC? Please let me know below what else you would want to tell people at an intro level by commenting below.

AAC for autistics 101

Part One: Assessment

I gave a presentation about AAC in a Speech/Hearing Sciences class on autism last week, and I want to share the text with you as a sort of “Intro to AAC” geared mostly towards students and professionals relatively new to the subject. That said, there’s probably going to be good info in here for families too as well as some core advocacy concepts AAC users might be interested in. (Warning, if you’ve read my blog before you may see some duplication of ideas, the goal with this two-part post is just to get all the sort of 101 info from my presentation into a consolidated online resource.) This week I’ll post the portion about assessing autistic people for AAC supports, and then next week will be tips on working with AAC users and helping advocate with us for communication rights.

As for assessment, hopefully you have already heard the phrase “presume competence”. This is a key principle in the AAC field. Another phrase I like that gets at the same thing is, “an absence of evidence is not evidence of absence”. So just because you have a child or adult in front of you who hasn’t yet demonstrated an ability to communicate, that doesn’t mean the ability is not there – it might just mean that they haven’t been offered the right supports yet. Think back to the social model of disability, and until proven otherwise assume that an autistic person’s lack of communication is a fault in the environment rather than a fault in their brain. There is nothing inherently superior about speech compared to other communication methods, so there’s no reason you should hold out for someone to develop speech – just provide AAC modeling early and constantly and see what happens. (Modeling means using the chosen AAC method for your part of the conversation so that we have an example of how to use it, the way speaking children hear speech around them all day to learn from.) The autistic person you’re working with may eventually develop speech or they may not, but with AAC at least they have a chance of communicating in the meantime. That’s a human right for people of every age and every neurotype.

There is a flip side to this, and it’s when you’re assessing an autistic person who does use speech, but perhaps has articulation or pragmatic impairments. Or maybe their speech even seems completely adequate to you – but please don’t assume that it is adequate to them internally! Verbal and semiverbal autistic people might very much benefit from AAC. An autistic friend who studies neuroscience, Alyssa Hillary Zisk, recently published an article on this. For many of us AAC is easier on our overall motor planning demands, or we have better fine motor control than oral motor control, or it is easier to work with visuals than auditory words, or it just saves us energy that would better be directed towards other areas like executive function skills or sensory modulation. We may not be expressing quite what we’re really trying to say when we have to use speech, or we may be unnecessarily exhausted by it. So I would recommend that any autistic person you encounter in your work should be considered for AAC supports. And actually, I’ll extend that to anyone presenting to a speech therapist in general, because someone who struggles with communication might not have an accurate diagnosis yet.

How do you decide on an AAC method? Well, do all the formal assessments and checklists you want, but if the person has already demonstrated any ability to understand choices and make decisions, I’d suggest also just showing them the various options and directly asking what they want to try! For people who haven’t yet had the opportunity to demonstrate an ability to understand choices and make decisions, start modeling at least one AAC method, while pairing with speech, and see what the person shows an interest in. If people around them don’t display a bias towards a specific communication method, then the autistic person will show you their preference by trying out the one that works best for them.

In choosing an AAC method to trial it’s important to consider communicators’ strengths versus impairments in motor skills as well as sensory modalities – alongside what is going to be most effective for their environment. For example, if someone’s family refuses to learn sign language, it might not be a good option. Of course, if it’s what the communicator prefers, you should be pressing their caregivers to support that. Considering cultural competence is also important – for example, a child from an immigrant family might prefer a text to speech device that offers an accent that fits their heritage rather than a device that only has white American voices. And gender variance is more common in autistic people than the general public, so never make an assumption about which gender coded voice a communicator will prefer.

Okay, there’s my thoughts on assessment, stay tuned for next week’s post on working with AAC users!

Timesuck: disability edition

Content warnings: skinpicking, mention of eating disorder

 

This might not be interesting to other people, I’m not sure, but I wanted to track and annotate how much time I spend on being disabled each week. See, I’m not sure abled people understand the timesuck that can happen with disabling conditions (and with navigating ableism). For this experiment, I didn’t include activities that were optional such as disability advocacy, but moreso things that I either can’t avoid at all or would put my health at risk to not do.

The total week came to 32 hours and 25 minutes, although most of that was the extra sleep I require (this is a combination of bipolar management and meds side effects) and the extra time transit takes compared to if I was able to drive. Here is the week’s totals broken down:

Extra sleep: 18 hours. I compared to a healthy person’s potential eight hours, although adult average is apparently more like seven. I didn’t track this down to five minute increments since it’s hard to tell exactly when I fall asleep, but instead approximated, often rounding down. Certainly there are tons of abled people who would love to sleep as much as I do, but for me it’s necessary, and not necessarily enjoyable.

Extra transit: 7 hours and 25 minutes. I compared my actual walk/bus/train trips with Google’s estimates of driving times. This is an example of another thing I do that some abled people do as well, it’s just that I literally can’t avoid it due to disability. I am so not capable of driving, even if I had the money for it. It’s part of my experience of being autistic.

Treatment: 5 hours and 30 minutes. This includes appointments, pharmacy, transit for those, taking meds, and symptom tracking. I’m also technically supposed to go to group therapy two hours a week but haven’t been doing that lately, which is probably unwise.

Communication supports: 1 hour. This was time spent preprogramming my device for upcoming activities (see my posts about AAC here). I didn’t count the extra amount of time any given conversation takes when I’m typing, as I had no real way of estimating the difference from conversations where I speak or sign the whole time.

Actively engaging in behavioral symptoms: only 35 minutes, yay! This week all of which was devoted to skinpicking. I used to spend 30+ minutes/day on that alone, but have been doing much better on all obsessive-compulsive spectrum symptoms lately. The total amount of time I spend on symptoms can be much higher during bipolar episodes, and almost automatically goes up to 4+ hours/day during acute eating disorder relapses. I decided not to count engaging in special interest stuff under this category even though that’s technically a “symptom” of autism, because for me it feels like mostly a positive autistic trait – it enriches my life rather than takes away from it.

Coordinating benefits/accommodations: 15 minutes. There are definitely weeks this takes an hour or much, much more. Nothing like being your own primary case manager.

Okay, given, I don’t have the spoons (spoon theory) necessary to actually work for 32 hours/week, but in theory look at all the time I could direct towards productivity if I was able! I would be much less poor. Or not to mention life would certainly be more fun if I could spend that time on crafts or special interests. I often resent the amount of sleep especially – can you imagine having 18 more hours a week than you have available right now to do whatever you wanted with? In truth, I can only barely imagine it. I have been living with my disabilities for so long that making this list was somewhat surprising. Advocates do frequently point out that being disabled (and poor, too) is a full time job, but I wasn’t sure before this data collection whether my own experience added up to that. It certainly got close!

Well, I don’t know if you found this as interesting as I did, heh, but maybe it gave you new insight into one disabled life. If you’re disabled and have ever done a tracking project along these lines, I’d love to hear about it! Feel free to comment below.

Letter of grievance re: confiscated AAC

Today’s blog post is a version of the letter I sent to two different hospitals after having my communication device taken away on their psych units (I just edited for identifying details mostly). I know some lovely speech therapists and AT specialists who generously co-signed with me, which I think added to the impact, but I hope that this sample letter will be useful for someone as an individual even if you don’t know any professionals who can back you up. Please feel free to use my wording or adapt it to fit your individual situation if you are thinking of filing a grievance somewhere about a similar experience! And honestly feel free to contact me if you want someone to look over your version or otherwise bounce ideas off of if you have had your communication supports taken away in any setting and want to file a grievance, I’d be happy to try to help.

Here’s what I wrote!

“Dear Patient Relations,

We are writing to express concern about the policies at your hospital that disadvantage patients with complex communication needs (CCN) and other assistive technology (AT) requirements.

At this patient’s last visit, their communication device was confiscated for the duration of their stay, preventing them from adequately getting their needs met and discussing their symptoms, treatments, and basic needs to staff. It is terrifying and frustrating to be in the midst of an autistic meltdown or psychiatric crisis and not be given the tools needed to ask for help. Expecting patients in this situation to substitute pen and paper for their usual communication device is not an adequate replacement; while some people who use AAC (augmentative and alternative communication) are capable of utilizing this surrogate communication method, others of us need options such as selecting pictures that represent whole words, or using sign language. Some of us need access to a variety of these options at different times, and we may use speech part-time as well, depending on our abilities at any given point. These intermittent abilities should not be used to invalidate our need for all of our usual options to be available to us at all times, as the individual communicator is the only one who knows what format we require at the moment. The governmental guidance on meeting the Americans with Disabilities Act’s legal requirements for providing communication accommodations specifies, “when choosing an aid or service, Title II entities are required to give primary consideration to the choice of aid or service requested by the person who has a communication disability”.

In this patient’s experience, staff defined their assistive device as a “personal belonging” subject to the same rules as clothing, books, and technology that doesn’t serve as AAC. Yet eyeglasses, another form of AT, were not subjected to this definition – and we assume hearing aids, wheelchairs, and additional AT would also be permitted here. Targeting communication devices as disallowed in this treatment environment is unfair to many patients with developmental disabilities, speech/communication disabilities, and hearing disabilities.

Staff gave multiple excuses for disallowing this patient’s communication device, and we would like to address each one.

– Device has a strap that could be used as a dangerous ligature: Strap is removable.

– Device has a camera function: Tape can be placed over the lens and the patient required to sign a contract stating that they won’t use the camera function and understand it will be confiscated if they were to break the contract. Although that solution should assuage your concerns, we’d like to point out the ban on all devices with cameras in this unit is already inherently discriminatory to mental health patients. Patients in physical health units are allowed their devices that have cameras, even if they are walking around the hallways or otherwise in viewing distance of additional patients. The idea that being filmed on a psychiatric unit would be inherently more shameful or damaging reinforces stigma against mentally ill people. It’s greatly concerning that mental health patients are being treated by people who buy into that stigma.

– Device might get damaged: Again, so might glasses, hearing aids, wheelchairs, or other AT that you allow. Additionally, patient could sign a contract taking full financial responsibility for any risk. You might not realize that our devices are at high risk of damage in our outside lives too – even just rainy weather requires protection – so many of us choose extremely resilient cases and harnesses for our devices that protect them adequately. It should be solely our decision whether we are willing to risk keeping it with us in every area of your hospital.

When the solutions above are not adequate for a certain brand of communication device, the hospital needs to provide an equitable alternative. A speech pathologist used to working in hospital settings should be consulted to assess the patient’s needs and provide an adequate substitute for their usual communication method. D/deaf patients and other communicators who use sign language should have access to an interpreter at all times. We highly recommend that you have a laminated letterboard and a picture board designed for acute psychiatric settings on the unit, to serve the needs of any patients who come in with a need for AAC but don’t have their own device or light tech communication supports with them. And it should be noted that the compromise decision offered at this patient’s last visit of being allowed to use their device only when at the nurses’ station and only when staff had time is not adequate. You do not place duct tape over the mouths of other patients anytime they’re not at the nurses’ station. Meanwhile, the fact that that unfair compromise was offered only after the patient was severely distressed by having to advocate for themself on paper is troubling. They did their best to communicate the above points via the limited communication method they were forced to use, repeatedly citing the ADA and requesting a speech therapist consult, but ended up in complete meltdown before even the compromise was reached. This is the opposite of psychiatric stabilization you are endeavoring to provide.

We hope you will consider all these points carefully and decide to:

1) Change your policy to allow all assistive technology (AT) everywhere in your hospital

2) Carefully communicate this policy to all staff so that patients are no longer required to spend so much energy advocating for their rights while in the midst of a crisis. As this local patient is relatively young with a chronic mental illness, it is somewhat likely they may need to visit your hospital again, and we would really appreciate it if you could send a copy of any updated policy to us for them to bring with them in the future to easily demonstrate to staff that their communication device is allowed.

If you would like assistance in acquiring a basic laminated letter board and picture board for your facility, we are happy to help.

Thank you for your consideration,

[signature]”

…Results from this letter was positive from both hospitals! One said my device will be allowed in the future and they are making sure all their emergency rooms across their hospital system have communication boards, and the other said my device will be allowed in the future (with staff supervision – meh, but still better) and that they have done staff training as a result of my grievance.

Have you had your communication supports taken away before (in any setting)? Please feel free to leave a comment below. And like I said, you’re welcome to contact me via this site or track me down on Twitter if you have a similar situation and hopefully I can offer some support as a fellow self-advocate who’s been there.

Unaccounted for: impairments, disabilities, and the social model

I’m sure many people have written about this before, and I think I’ve even touched on it in another post, but I want to share my thoughts about how I relate to the social model of disability. For those unfamiliar with this model (versus the traditional medical model), here is a journal article or a more cognitively accessible description.

So, first off: yes! Yes yes yes, a thousand times yes. We absolutely are disabled by society’s lack of accessibility. This is such a helpful framework for talking about disability justice and changing the world. And at the same time, secondly: the social model doesn’t fully account for all experiences of disability.

This seeming paradox is true even for me as an individual. There are aspects of my disabilities that are essentially societally created – ways that my brain is not accounted for by the systems, institutions, and individuals around me – but there are also aspects that are just sheer intrinsic impairments, things that would still disable me even in a perfectly built anti-ableist world. This is mostly true of my mental illnesses, but also (maybe controversially? at least in some circles?) of my experience of autism.

Sensory processing differences are a significant impairment, for myself and many other autistic people, that can’t entirely be accommodated. The sun may be too bright even with sunglasses, even the quietest train may be too loud despite ear protectors (although I’ll note that I’m currently on a train with layered earplugs and ear protectors and it’s positively glorious), we may have restricted food intake due to taste and texture sensitivities, and our auditory processing might not be very good even in environments with little background noise. Executive dysfunction can also be significantly disabling, even for those of us with access to assistive technology and/or support people. And personally, I just periodically run out of capacity for social interaction. Using AAC helps moderate that, and spaces that use color communication markers help greatly, but I think even if those accommodations were constantly available and affirmed I would still sometimes just not have the spoons (description of spoon theory here) to interact.

My mental illnesses are even more clearly unaccounted for by the social model. I doubt there is any combination of medicines or other psychiatric supports that would permanently prevent the pain and consequences of future bipolar episodes, and I have long since concluded that I am likely to have some degree of disordered eating (and/or associated distress) no matter what treatments I try. It helps prevent mood episodes that I don’t have to work to survive right now, and it would probably help immensely if I had in home supports to help me prepare food in a more normative way, but there aren’t accommodations or societal changes I can think of that would erase these disabilities entirely. Same goes for PTSD – some of my triggers are uncommon enough that they wouldn’t generally show up in a list of content warnings even if the entire world was doing their best to content-warn everything. And even if everyone around me were conscious of loud noises and sudden movements, nature itself (not to mention civilization) is liable to startle me from behind.

Here’s the thing, though – although the social model doesn’t account for these realities, I don’t want to bounce back to the default medical model in order to explain them. Why? The medical model, in my experience, is drenched in value judgements. There is a vile disdain that seeps through when disabilities are discussed simply as diseases and disorders. The negativity goes beyond the innate distress of our impairments and enters a realm of morality, where those of us who experience these impairments are unworthy. Not only does the medical model fail to illustrate the need for societal accessibility, it shapes the vicious ableism that makes disabled people unhireable, undateable, unsupported, and unwanted.

So even where the social model fails to explain my life I refuse to revert back to the medical model to fill in the gaps. I want to retain the power to name and describe the ways I suffer, not leave the delineation up to the cisnormative, heteropatriarchal, racist, sizeist, ableist field of medicine. When I say I am disabled, that is a personal identity – shaped by both impairments and societal barriers – that transcends flat diagnostic criteria, insurance codes, and prescriptive cries of “cure!”. I see myself both surrounded by clouds of inaccessibility AND enduring other clouds that exist solely within my own mind. I am not comfortable in the world nor am I comfortable with only myself. There is an ongoing dynamic interchange between these discomforts; neither is absolute or isolated. I will not give my unaccommodatable impairments back to the medical model just because they don’t fit the social. They are MINE. I will carry them forward with me as I carve out a place in the world. The place I am carving might never be easy or enjoyable, no matter what access barriers are torn down. But I aim to make it a place in which my disabilities are acknowledged, accounted for, not as curses or demons or failures or signs that I am not a worthwhile person, but simply as parts of who I am.

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:

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):

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:

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.

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!

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.