Not being able to speak is not the same as not having anything to say! AAC Awareness Month

     Augmentative and Alternative Communication (AAC) is any form of communication that supplements or replaces speech. AAC can take many forms, from sign language to facial expressions, to printed communication books to high tech speech generating devices (SGDs AKA “talkers”). Basically, if it isn’t speech it is AAC! High tech does not always mean better and just like study habits and treatment plans, what works for one person might not work well for another, even with the same diagnosis. AAC users are of all ages, genders, races, disabilities, and literacy levels but they all have either no speech, speech that is difficult to understand, or have trouble forming fluent speech.

Remember that last time you lost your voice? I can almost guarantee you that you became frustrated at least once during that time period. Now imagine that you have an itch on the center of your back and you cannot speak. You’re only given this sheet of laminate paper.

You can’t sign, speak, or write. How do you tell me your back itches? Maybe … “I/me/me — help — turn…” then directional words until your communication partner happens upon the place your back itches??

Sounds “no want”? What? Not the word you were thinking of? Oh well… good enough. NO NO NO!

     Everybody should be given access to words (and symbols). Words are powerful and they make us who we are and allow us to connect with others. They surround us from the moment we are born to our very last breaths. Words are more than just basic needs and wants. Words are social, personal, creative and powerful. Nobody should have that kept from them.

Tips for Communicating with a person who uses AAC:

  • Be patient! One of the most frustrating things for me if being asked a question and halfway through your response they say something like, “oh, nevermind” or “don’t worry about it”. Similarly, group conversations can be VERY difficult when it takes you longer to respond. I often form my answer and by time I have finished my response is irrelevant. Don’t be offended if I tend to be quieter in groups, I am listening! I know it is hard to take the time to slow it down but I guaranteed you the AAC user will be very grateful!
  • Don’t limit to yes and no questions. It gets boring really quick. That being said, if an answer is needed quickly, it might be helpful to ask yes or no questions or give a few options to chose from. Ex. “Julie, the house is burning and I need to know, should we use: unicorn power, ninjas or rocks to stop the fire. Unicorn power? (yes/no) Ninjas? (yes/no) Rocks? (yes/no) Something else? (wait for response using AAC).
  • Presume competence. Talk to us at an age appropriate level and normal volume and rate (unless known to have hearing or processing issues). POP QUIZ! (all based on actual experiences)
    •  Billy is 40 years old Giants fan and uses a speech generating device. When talking to Billy you should:
      1. HELLO BILLY BOY! HOW————ARE———YOU?!
      2. Hi Billy, how are you? I saw the Giants won last night!
      3. *turns to Billy’s wife* Hi Betty! How are you? How is Billy doing?
    • If you answered #2, wahoo! You get it.
  • Advocate with us and for us!


Cool AAC Related Stuff:

Above: Video compilation project showing AAC users doing various activities and living their lives!

Above: An example of a SGD and computer controlled with the users eyes. For more information click here.

For a great website for AAC resources (use, teaching, awareness) click here (PrAACtical AAC)!

Examples of popular low and high tech systems:



Getting Hip with the Lingo

  • Augmentative and Alternative Communication (AAC): includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write (Source: ASHA)
  • Speech-Generating Device: Any piece of technology that turns user inputted text or symbols and turns it into spoken computer generated or synthesized voice. AKA a machine that talks for you.
  • Switch Access: using a switch to control your AAC device (like an automatic door switch). Switches can be activated using touch, light, sound, breath, or even tongue movements!


If you don’t know that reference it is from an 2007 phone commercial. Classic.

Anyways, I wanted to write a post about technology as assistive technology (AT) and more than just soul sucking relationship ruining screens that give you cancer. I will talk about how I use my devices as AT and why they are important for me and because of such, will be talking exclusively about Apple iOS devices because that is what I use. I plan to do another post about iOS as AAC devices and switch access eventually so this isn’t the longest most boring post ever!

I am a die hard Apple fan. I was a die hard Apple fan before I got sick and have fallen even more in love since then. First, I am in no way paid by or speak for Apple or anything, I don’t know why people have to say that but they do so I will! Second, I am not going to talk about Android because I know nothing of Android. I know they do not have as extensive built in accessibility features but they work better for some and that is fine. Lastly, I’m mainly going to be talking about why I choose Apple products as a person with a disability and what features help me or might be of help to those with similar conditions. So leggo my eggo (not paid by them either 😦 )!
First I’m going to talk about some settings/features that aren’t technically accessibility settings (other menus) but that I have found to be helpful. 

Visual Voicemail and Transcription


Apple’s visual voicemail system is one of the most underrated features in my opinion. For people with hearing/auditory processing issues, gone are the days of trying to remember which button to press to repeat the message…giving up and having to call VM all over again because you didn’t quite catch that middle part. New to iOS10 is a beta for automatic voicemail transcription. Now, when you click on a message and press play, the recording plays and an automatic transcription is written below. If it picks up a phone number it will be hyperlinked and a long press will give you options to call, message, or add number to contacts. For someone with Dyslexia this is a god send. I call/text wrong numbers constantly when I try to manually copy them down. Additionally, it is useful for those with hearing loss, auditory processing issues, or even if you want to scan the content in a meeting to know if it is urgent.

Find My Friends/ Location sharing in apps such as messages

At first I was not into having my mom be able to open an app and track my phone but it really has grown on me. This is definitely not the set-up for everyone (could be with someone other than your mom) but in times where I have gotten hauled off to the ER and they leave a VM on her phone saying “Julie’s in the ER”, being able to see which ER, if I am still there, or where I am if I am too confused to figure it out can be super useful. Again, not for everyone. 


Siri is great and almighty electronic goddess, obey her.


(to set up) Health App>Medical ID> Edit
At the minimum please put in your organ donor status, name, and emergency contacts. It can be accessed by EMS/ED staff even if you have a lock on your phone. To view access, get to the lock screen with the number panel, click emergency in the bottom left, click medical ID.

ACCESSIBILITY SETTINGS (iPad and iPhone though most are available on laptop just different paths etc)

******There are so many– I’m just going over what I personally use******

Display Accommodations


Settings>General>Accessibility> Display Accommodations


Another brilliant addition to iOS10 was the Color Filters setting. This allows the user to tint their screen to their liking/need. This is a godsend for anyone with photosensitivity, migraines, color blindness, eye strain, and other vision conditions. It allows me to turn my screen a nice pinky-orangey tint that I would otherwise have to wear my specialty  indoor migraine glasses for. Another feature in this category is Reduce Whitepoint. This setting allows the user to reduce the intensity of bright colors on the screen by 25-100%. No longer need you be blinded by a white screen loading a webpage on ridiculously slow internet.


I wouldn’t be able to do much of my homework or social media without text-to-speech software due to eye strain, dyslexia, migraines, photosensitivity and reading comprehension issues. This is definitely one of my most undervalued helpers and it wasn’t until I was trying to read a textbook chapter on a different computer that I realize how much I rely on it and am assisted by it.
  • Speak selection: when on, this will give you a “speak” button when you highlight text (next to copy/paste etc)
  • Speak screen: dragging two fingers from the top down will start speaking items on the screen
  • Highlight content: highlights words/sentences/words and sentences as they are read
  • Typing feedback: options to have keys/words/sentences you type to be read back to you
  • Voices: different synthesized voice options for speaker for gender, language, and accent
  • Speaking Rate: how fast the voice talks
  • Pronunciations: tell it how to say certain words like Ehlers-Danlos

Reduce Motion

Settings>General>Accessibility> Reduce Motion
This one is really helpful if you have vision triggered disabilities or just don’t want all the fancy graphics for things like opening and closing apps.

Switch Control and Assistive Touch

Settings>General>Accessibility>Switch Control or Assistive Touch
These are more specialized/complicated but amazing accessibility features I plan to do a separate post or maybe video for but I will just share their purpose now. Switch Control is for people with physical, cognitive, or sensory disabilities who have trouble accessing all or many of their functions or their iDevices via direct selection AKA touching the screen with their hand or a stylus. It is a built in program that allows the device to be controlled and used entirely via 1 or 1 switches. Switches can be the whole screen, head movements, external switches (wired or bluetooth), sip and puff (controlled by mouth movements) and more! For an example of switch access by someone who can do amazing things with it, watch the video! Assistive Touch is basically an accessible menu for people who have physical challenges performing actions like pinching to zoom.

Subtitles and Captioning

Settings>General>Accessibility>Media> Subtitles and Captioning
I actually only recently learned about this feature but if you like subtitles or need them, make sure you have this setting turned on and it will automatically turn on subtitles when available in apps like facebook, netflix, chrome etc.

Accessibility Shortcut

Settings>General>Accessibility> Accessibility Shortcut
Another relatively new feature this one can wear many different hats based on your needs. What is does is set a shortcut on/off switch for a selected accessibility feature by triple clicking the home button. On my phone, this turns on the pinky-orangey tint from my Color Filters settings. Since I only use that at night usually, it saves me a couple clicks turning it on/off everyday. On my iPad, I have it set to turn on Switch Control (more on that later) for when I use that.

Flashies: A Saga of the Photosensitive

      Anyone close to me has now acquired an extra sense, the spidey sense of disability (I know, being friends with me comes with some real perks!). For many who don’t have a disability or are exposed to people with disabilities (PWDs) there are MANY things that get picked up by your senses and determined unimportant by your attention and fly under your radar… and therefore most of you never think about this stuff. Today’s post is a rant about all those things you probably never thought about/ thought mattered in hope that someday, somewhere, it will be useful knowledge to you. I’m going to break it down into categories for your organizational pleasure: (or just so you can skip to the stuff you might care about haha) physical accessibility, sensory processing, and photosensitivity/flashing lights.

Physical Accessibility

    This is probably the most on-your-radar one but still very important. First, PSA, if I hear one more person say,  “xyz is accessible except a few steps” I will hulk smash. In terms of physical accessiblity, stairs are a no. Doesn’t matter how many. Just no. Love, every person who uses a mobility device. Just saying… and in case you don’t think this happens… it happens all the time. 
yeah. thanks dave.
     *I know physical accessibility is not limited to just wheelchair users but we would be here forever, so I’m just talking wheelchairs for now*
       Okay, it is Friday night and you want to have some fun. If you use a wheelchair your spidey senses are tingling. Things that go through your head:

  • does that restaurant have stairs?
  • do I remember if their bathroom is accessible?
  • does public transit go there? can my wheelchair fit in Smithy’s car?
  • is the place maneuverable? (particularly small places, clothing store racks are hell)
  • what is the height of the tables?
    Other places:
  • is there a ramp?
  • will I be able to reach things? (shelves in grocery stores, bookstores)
  • will I be able to carry what I buy?
  • can I get there?
(video as a parody response to the Rio Paralympics Promo Video)

Sensory Processing

    Aight so this one most of you probably don’t have as much exposure to, except maybe if you know someone with autism. It is not something you can see, and at least for me personally, not something I talk about a whole lot if ever. There are a whole lot of sensory related issues and often come comorbid to conditions like Autism, EDS, Down Syndrome, Chiari, and Schizophrenia etc. One condition associated with this that I have is called Sensory Processing Disorder (SPD formerly Sensory Integration Disorder) and is very similar to how it sounds. Basically, my brain has trouble processing and evaluating sensory information such as light, touch, sound, taste, proprioception (where your body is in space), vestibular and motor control, etc. I divide it into two stages: input and processing. 
With SPD:
  • sensory information coming in can be converted to extremes (under processing or over processing)
  • people can experience heightened vision but depressed sense of taste
  • can lead to overstimulation which is when all the input from the environment you are in becomes too overwhelming and starts to become incomprehensible 
    • This video does a good job of trying to represent overstimulation (cw: changing lights and sounds)
    • Source (good article on SPD)
    • For me, even having two different people talking at the same time makes it hard for me to understand the person I am talking to and I use a lot of context clues and lip reading to try and help my brain figure it out
  • people can be sensory seeking or sensory avoidant or both
    • sensory seeking is like it sounds, seeking out input that is comforting (weighted blanket, soft fabric, hugs, running water)
    • sensory avoidant is like it sounds, avoiding input that is too extreme or not liked (textures of food, tags on clothing, bright lights, strong perfumes)
  • looks different for everyone
  • things that you don’t notice or can ignore may overwhelm us or we are unable to filter it out  (i.e. buzzing of florescent lights, fans on laptops, tapping of pencils)
    For me, I am extremely sensitive to light (see next section) and have a mix of levels on other senses. I had no idea everyone didn’t see the world like this until I got to college and learned about it in class. It is hard to describe what it is like in writing, but the video comes pretty close. For me places like the movies, grocery stores, classrooms, hospitals and shopping malls are overwhelming due to all the noises, types of lights, tile floors, people, smells, and unpredictability. New places are also anxiety provoking because I don’t know if they will be too overwhelming. 

Flashing Lights/ Photosensitivity

      Flashing lights are everywhere. I guarantee you you can think of some examples, I also guarantee you can’t think of 2/3 of them unless you’ve spent enough time around me. For me, flashing lights (and loud noises and extreme emotions) trigger seizure like episodes (thanks Long QT). For others, flashies can trigger seizures, migraines, fainting spells, nausea, disorientation, and more. Some flashies are unavoidable unless you are Thor (thanks bro for the lighting and thunder combo…really helpful), a movie producer, or a video game designer, but many are/ are able to put less risk in situations for people like me. Fun fact: in video game ratings in America they have to list strobe scenes in the rating but movies, concerts, plays, amusement parks, escape rooms etc do not. 
this bloody scene
For funzies let’s go through some examples of flashies:
  • lightning
  • lightning in movies
  • fire effing alarms (seriously I will come teach you how to make popcorn)
  • camera flashes
  • camera flashes in movies
  • sirens
  • strobe lights in plays, concerts, movies, rides, clubs etc
  • quick scene changes (lumped in because can have same effect)
  • explosions
  • gunfire in movies
  • lightsabers (and lightsabers in movies)
  • damn apple accessiblity feature where the camera light flashes when you get a notification 
  • did I mention camera flashes?
  • 70% of the last 5 Harry Potter movies
So what? Expect me to just have shitty dark pictures of my kid’s birthday in a gloomy restaurant?
Well yeah, if you don’t mind…
          Just kidding. As with most of these things, unavoidable is unavoidable. But here’s what you can do: opt to turn your flash off when not needed or try to aim the flash away from randos, ask before taking flash pictures in groups, take a mental picture, don’t burn popcorn, give warnings if you are directing plays, post signs, note time stamps in movies if watching with a sensitive friend so you can warn them, turn off that damn feature unless you need it because your deaf of HoH, and of course, be courteous and aware of your surroundings. It can be awkward and impossible for some to assert themselves in situations like this, so if they do please don’t give them shit. It was probably hard for them to do. 
Phew. You better feel more edjamakated now. Julie out.