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.

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.

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.

What I wish others knew about interacting with me as an AAC user

Almost every single day I leave the house I end up in an awkward (at best) or infuriating (at worst) conversation with people who have no understanding of good AAC etiquette. Most abled folks have no experience talking with somebody like me – and that lack of experience, not to mention just ingrained ableism, shows in their behavior. Here are the things I wish everybody knew about treating me well when I am communicating differently than they expect.

The most important thing I can recommend is, just ask the person you’re talking to how to interact with them respectfully! Every AAC user has different needs and preferences, so while I think my advice below contains good starter recommendations for many AAC users you might meet, it is best to check with the individual person you are talking to what they prefer.

Be patient! Most of us need extra time to communicate, possibly quite a lot of extra time. I get that as a speaking person you might feel uncomfortable with stretches of silence you’re unaccustomed to, but please resist the temptation to fill it while I am typing. Otherwise by the time I am ready to press play you might be on a totally different topic, or you may have distracted me so much I wasn’t able to get out what I really wanted to. To me, my typing is just as much a part of my turn talking as is the part where my device actually reads my words, so if you would not interrupt a speaking person in the middle of their sentence, do not interrupt my typing either.

Some of us are d/Deaf or hard of hearing, have auditory processing issues, or have other receptive communication impairments, but many of us can understand your speech just fine! So please ascertain whether we actually need it before you start gesturing at us or writing everything down.

It is hard for me to participate equitably in meetings and other group discussions. I feel pressured to give up and speak if I want a chance to be listened to, or pressured to switch from my symbols AAC app to the QWERTY one I often can type faster on. Many days giving in and doing that means I have a meltdown or shutdown later. You might see me speaking and think it is comfortable, but in reality it may just be that you are creating an environment where I feel like I have no other choice, and you do not see the fallout later. For me it seems like the best way to include me in big discussions is to designate somebody to call the names of people who have raised their hands to show they want a turn to talk. It might feel more formal than your organization is used to, but it is the best way to include me in a way that respects my communication needs.

Please don’t read over my shoulder and try to finish my sentences for me. I might choose to show you my screen sometimes to keep our conversation private, but it should be up to me, so ask before reading over my shoulder. I’m happy to show you my screen if you don’t understand the device’s pronunciation the first time, or if I know you have auditory processing problems or other relevant disabilities. Some AAC users request that support people do attempt to guess the rest of what they’re saying, to decrease the amount of labor it takes to type, but if I haven’t asked you for that kind of help it’s rude to constantly be trying to talk for me.

Don’t take my AAC away for any reason*! Medical professionals, I’m looking at you. It is vital that I have as many communication options as possible especially in emergency healthcare settings, so if you’re going to confiscate my device you need to provide me with an equitable option – not just pen and paper. (Backstory = some psych wards don’t allow any electronics that have camera functions. This is sanist garbage; other hospital units are just as subject to privacy laws but don’t have the same rules.) Other AAC users face this breach of decency from caregivers or support staff, and it’s ableist and/or ageist bullshit every time. As advocates often say, “if you wouldn’t duct tape someone’s mouth closed, don’t take away their communication device”. (*Okay, the one reason I’ll accept is if the device is likely to get damaged, such as in a swimming pool. In which case, you should attempt to take it away with my consent rather than without asking. You should also offer at least a basic replacement means of communication safe for that environment, such as laminated picture cards or a plastic letterboard.)

Please let me know if I need to turn the volume up or down. I do have auditory processing issues such that I can be a bad judge of whether my device is set to an appropriate volume. I do not mind you asking me to play my message more quietly or loudly.

I may speak part time! Actually, I often switch back and forth between communication methods within one conversation. This does not mean that you can expect or pressure me to speak at any given point. How I communicate is up to me, and you need to respect that I have valid reasons for my choices without me having to explain myself to you.

To reiterate, not every AAC user will share my preferences, but these points are a starting place you can work from as you find out what the person you’re talking with needs from you as a communication partner. If you are a speaking person with an AAC-using friend who is being treated badly by strangers who don’t know how to interact, use your voice to educate the person on how to be more respectful. It is scary and exhausting for me to do that work on my own in every little day to day interaction, and unfortunately people tend to respond better when my speaking friends explain my need for AAC than when I try to advocate for myself. If you’re not sure whether your friend would want you to intervene in this way, find a time you’re alone to ask whether it would be helpful for them or what they want you to say.

Are you an AAC user who has additional input or other preferences? Please feel free to comment below.

Finding AAC as a verbal/semiverbal autistic

Though I graduated from speech therapy at eleven years old – I guess they finally trained me to pronounce all my consonants “correctly” – it seems speaking still requires more energy for me than it does for most neurotypicals. For example, when I worked a job that required as much time in important conversation as it did in independent tasks, I skittered into and out of burnout for years before finally entering an intractable episode that resulted in me quitting. I just couldn’t do the job anymore; I was missing shifts constantly because I couldn’t bring myself to attempt the impossible. Part of this exhaustion was the additional difficulties of constant social interactions and multitasking, not speech specifically – and definitely the huge amount of other masking I was doing in order to try to seem “normal” – but now that I understand more about how speech works for me I can look back and see how much it was draining me.

It’s hilarious how well I subconsciously knew that speech is hard for me for the decades prior to knowing about dedicated AAC. For example, in my early twenties I fell into a habit of deliberately spending every Sunday in silence… something I could never explain an adequate reason for, yet I somehow knew that I needed the regular break. For as long as I can remember I’ve relied on handwritten notes on a regular basis for conversing with people in the same room. Now that I have a cell phone and internet access most of my relationships are maintained through texts and emails and instant messaging rather than spoken conversations. As a kid I resented and avoided my speech therapy homework – why work so hard to read aloud “properly” for fifteen minutes every day if I could absorb twice that much precious text in the same amount of time reading quietly? Then as a teenager I sought out ASL classes at community college rather than fulfill my school’s language requirement with one of their speech-based languages. All this and I still had no idea what AAC was – or even that I was autistic.

Coming into the autistic community has saved me in so many ways, and the information about AAC and implicit “permission” to use it is a big one. #AutChat is I think where I first learned that AAC is an actual thing, and I started experimenting with low tech options on my own such as laminated cards with pre-prepared sentences designed for situations I’m likely to be nonverbal in (namely, in mental health crises and especially hospital visits, but I made some day-to-day cards too). Stickman communications gave me some inspiration for this option. Then in 2017, wonderfully, I got to go to ASAN’s Autism Campus Inclusion program and – amongst amazing activist training – met my friend Saoirse and other AAC users. I learned it’s possible any AAC method might prove useful even for autistic people who have thought of themselves as verbal/speaking or semiverbal/intermittently-speaking. With my new friends I experimented with some free text to speech apps on my phone, and Saoirse generously introduced me to their symbols based program as well as their laminated letterboard.

I don’t think it’s an overstatement to say that my life changed. Even immediately: navigating the plane home it was slightly less stressful to know that if there was a problem with the TSA (I’m trans, so there’s always a problem) and I ended up in shutdown I might be able to communicate using my phone. I used text to speech to direct the cab driver, and after an initially bad reaction we chatted and they ended up asking me the name of the app because they have an autistic nephew. Finally arriving home in the wee hours, I was less tired than I expected.

Today I use a mix of speech, text to speech apps, symbols based AAC app, sign language, and pen and paper. Often I switch back and forth between methods within one conversation. I use AAC when low on spoons, when out of spoons, or when preventatively trying to conserve spoons. I use it coming out of meltdowns and shutdowns (I find the symbols based app easiest during these times). I use it in my college class and to talk to my neighbors. I use it for medical appointments and group therapy. And I use it simply because my quality of life improves when I can spend the effort it takes to speak instead on things like executive function, the self care I struggle with such as chores and eating well, and activities I enjoy.

If you are also a verbal/speaking or semiverbal/intermittently-speaking autistic person and you’re wondering if AAC might be useful for you – consider this your permission slip! You have the right to try any AAC method you think might be more comfortable than speech. Many states have lending libraries of equipment for disabled people to test out to help them decide whether to invest in a significant purchase – if the less robust free apps available for your existing device aren’t cutting it and you want to try out something fancier, look for a library like this so you can see how it works for you before deciding whether to buy (this is the program I used in Oregon.) And if you find something you like? Whether it’s pen and paper, a small whiteboard, sign language, text messaging, text-to-speech, symbols-based AAC – if you prefer it for any reason, then yes, AAC is for you! You don’t need to prove a functioning label (ick) or a perceivable lack of verbal ability or even a formal diagnosis to somehow qualify to use a method of communication that you benefit from. Don’t listen to anyone telling you forcing yourself to speak is better: there is absolutely nothing superior about speech compared to other forms of communication, it’s just that because it happens to work for abled people it has become the societally normed benchmark everyone is supposed to aim for.