Communication access and ableism

Adapted from a presentation I gave to college students today.

Content warnings: eugenics, abuse, coronavirus

Thinking about communication accessibility is important because access barriers are a huge part of disabled people’s day to day life, and it’s exhausting to usually be the only one addressing them. What shapes access barriers is structural and interpersonal ableism. Ableism demands all day every day that we as disabled people conform to the kinds of communication that are most convenient for abled people rather than those which are even slightly accessible to us. Not only that, it demands that the content of what we communicate is docile and submissive; we’re not supposed to stand up for our rights, disagree with mainstream culture, refuse unsolicited help, or self advocate. Let me give some pertinent examples.

Deaf and Hard of Hearing people have had to petition countless local governments around the world lately to add sign language interpretation to their press conferences and health advisories about coronavirus. At the level of government-provided information and mass media, this should not be seen as a bonus unplanned for accommodation that might be arranged upon request, but as a baseline accessibility measure required to meet the needs of the public at large. If not implemented from the outset, disabled lives are threatened due to lack of the same information that abled people have free access to. Similarly, it’s disabled run organizations and individuals that have taken it upon themselves to create cognitively accessible information about Covid – summarizing official briefings in plain language, adding illustrations and glossaries, and creating social stories for fellow autistic people devastated by the sudden change in daily routine. We do all this in part because we know that we are in that much more danger if we get sick. Even if we’re not personally immuno-compromised or dealing with underlying conditions that make the virus particularly dangerous to our bodies, we know that disabled lives are seen as less valuable, to the extent that many jurisdictions make decisions about how to ration medical treatment such as ventilators based on the presence of other disabilities and how an outsider estimates the impact of disability on subjective quality of life. This means that disabled people, including people who are labeled unable to communicate and people with intellectual disabilities, can be sacrificed in favor of saving patients without pre-existing disabilities. This is one example of modern day eugenics. So when people fight for communication access, it is not about mere convenience or political correctness. It is a matter of life and death.

The federal government has released guidance on how to enact the Americans with Disabilities Act in regards to communication accommodations, which really, the law should be seen as the bare minimum for making something accessible. That guidance states that primary consideration of which communication accommodation is provided should be the disabled person’s preference, which brings us around to the idea of communicative choice. It should be up to each disabled person to choose communication methods that work best for us in the moment. This is often not going to look the same as abled communication, and it’s not necessarily even going to look the same from day to day. I switch regularly between AAC that uses spelling versus AAC that uses picture symbols, high tech AAC versus light tech AAC, sign language, plus a bit of speech. I remember noticing one day a few weeks ago, it’s only noon and I’ve already used five forms of AAC this morning. I’m proud of being a multimodal communicator. Have you ever been in the middle of writing an email when the phone rings, and then while you’re talking your roommate comes over to ask something and you hold up a hand to them to mean wait, i’m on the phone? See, you’re a multimodal communicator too, but if you’re abled people probably don’t consider that anything but normal. Yet if people are used to me speaking, they are surprised I often need AAC. If they’re used to me using my communication device, they are surprised I might prefer a sign language interpreter. When you’re disabled your methods of communication are under endless scrutiny, skepticism, and ableist expectations.

So what’s important is to support disabled people’s communication by giving us as many options as possible, and validate whatever method we choose at any given moment. This means giving Deaf and Hard of Hearing children access to sign language and Deaf culture from day one rather than pushing oralism, and giving neurodivergent children access to AAC from the very first indication of a speech delay rather than pushing speech skills. It means adding image descriptions to your social media posts, whether or not you happen to know that a blind person will read them. It means celebrating autistic people’s echolalia, and infodumping about our special interests, and stimming, as important and valid forms of communication. And sometimes it might mean having conversations that aren’t totally comfortable for you. It’s more respectful for you to ditch your self consciousness and just go ahead and ask us how you can best support our individual communication, rather than being a conversation partner who finishes sentences for us, changes the subject while we’re typing, reads over our shoulders, touches our communication devices, or demands details about our medical history, without having asked whether any of that is okay or helpful for us. Sometimes we will say things that make you feel uncomfortable too. In autistic culture we are often upfront and direct about how we talk about things, this isn’t seen as rude but just as normal for our kind of brain. We might not know how to translate it into the kinds of phrasing that neurotypicals expect, or we may have too much going on at the moment to be able to spend the energy doing so.

Other times disabled people of any neurotype can find themselves forced to be rude in order to be listened to! When you are blind and people grab you without consent, forcing you to walk in the direction they think is helpful – or you use a mobility device and people take it upon themselves to move you around like furniture, despite your protests – these violations of bodily integrity are what is truly rude, and confronting them is a kind of self advocacy that abled people don’t often want to hear. When they’ve invested their ego in the idea that they help the disabled, that they use their superiority over us to make decisions in our best interests, they think us saying “don’t do that” or “I don’t need your help” or “leave me alone” is inappropriate or ungrateful. Let alone if we say those things without speech, at which point they might not consider it communication at all. It might be written off as just a behavior or a symptom, not a message that deserves consideration. Even within forms of AAC, sometimes speaking people privilege the ones that come closest to typical speech. They’d rather me use a device with a QWERTY keyboard and expressive voice output to compose full sentences in proper English, whereas if what I’m able to do that day is just point to hard copy picture symbols silently, a verb here, a noun there – somehow that makes me less of a person. But all communication should be honored, all people should be respected. Saying no, whether that’s with mouth words or some other way, is an important communicative function. Noncompliance and refusal are valuable social skills that help us set boundaries and protect us from the abuse we as disabled people are so likely to be subjected to.

In summary, we deserve to be our own decision makers about how we communicate and the content of our messages. Existing ableist structures and ideals are not a legitimate reason to withhold information from us, refuse to provide us with communication accommodations, or dismiss our messages. Communication access is a human right that is frequently denied to disabled people, and if you’re abled part of your job as an ally/accomplice is to help us fight for that access.