Stephen Hawking also used AAC: notes on the disability discussion

Acknowledge Hawking’s AAC use – and also know and remember that everyone deserves access to communication supports.

Stephen Hawking, the disabled theoretical physicist and cosmologist with ALS, recently died at the age of 76. I love the stars and space: enough to embrace what is cold and distant to our eyes, the fiery fusion of star atoms we may never get close to. Sadly, this love has not allowed me understand theoretical physics, even in layman’s terms. 

But I’m disabled, too, so I understand parts of that bit. I can talk out loud, but not always. What I say may not always be what I mean. I try to write more than I talk. I can walk, but it’s often painful, and limited to half a mile at once. I don’t use AAC or a wheelchair full-time. My main advocacy has been with the autistic and I/DD community. My values are rooted in access for everyone: people who don’t have adequate communication supports, and people who use AAC, even if they didn’t turn out to be geniuses. 

So that’s where I’m coming from for the rest of the post. Okay? Okay. I have something to say about the disability community’s conversation on him. We’ve been fighting the erasure or denigration of his disability by non-disabled people, including the media.

(For those who missed it: there is a lot of “in spite of disability” and “free from his wheelchair” language when his disability status is discussed in the media. Hawking’s disability was an important part of who he was. He achieved all his work informed by his disability, not in spite of it. And death is not better for disabled people: support us in life, not laud our deaths.)

Which, yes, be angry about that! But many of discussions only note his power chair use. Which the erasure of his power chair is a problem. But I often do not see a similar emphasis on his AAC use and how that’s an equally valuable part of his disability experience. I want you to start valuing his AAC as much as I hear you talking about his power chair. I am not asking for you to prioritize him being an AAC user over that. I just want you to grant his use of AAC the same level of importance (Some of you are, and I see you! Thank you).

Hawking himself stated access to communication supports are critical to make available:

I want to use my high profile to raise awareness of issues around disability and communication. Recently, my communication system broke down for three days, and I was shocked by how powerless I felt. I want to speak up for people who live their whole lives in that state. My hope is that the kinds of technologies I have trialed and helped develop will become easily and cheaply available to all who need them. We need to make sure this technology becomes available to those who need it.

Hawking also freely acknowledged the significant privilege he had: “But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival.” 

Beyond Stephen Hawking, access to communication supports is a right, for everyone. 

So are things like presuming competence, which doesn’t mean “treat people like they’re not disabled,” but “treat them like a person with strengths and support needs.” As Julia Bascom wrote in 2014 about a thing that happens sometimes involving autistic children with high communication support needs:

Autistic child is presumed to be very significantly intellectually disabled. Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart…. The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say…

…These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support.

Make sure you are acknowledging that Stephen Hawking used AAC as part of his disability experience. That disabled people who aren’t theoretical physicists use AAC, too. That disabled people who aren’t secret geniuses and don’t have adequate communication supports have things to say. The potential for, or existence of, “genius” and “gifts” is not why people have the right to communication supports. We all have decisions to make, along with needs and desires to express.

We all have something to say, no matter: our level of education and employment status, how much support we need to make decisions, if we rely on social safety nets or not, what disability we have and how it impacts us. We all have something to say, no matter what.

The shape(s) of narratives that spill and flow over neat lines and boxes

Resonance and representation in The Shape of Water

The Shape of Water (2017) and its relationship to disability narratives is undeniably complicated and at times flawed.

I mean…I think there definite is room for criticism. It’s unavoidably a problematic story.

But then, some of us have had problematic lives.

— Emily Paige Ballou (@epballou) March 4, 2018

Some of us who identify with parts of the film and characters, have, as Emily points out on Twitter, problematic lives. My interpretation of problematic is operating outside accepted narratives (Emily may have a different definition; this is mine).

The Shape of Water follows Elisa Esposito, a nonspeaking woman living in 1962 Baltimore. While hearing, she uses American Sign Language (ASL) to communicate. Her friends are Giles (a gay artist) and Zelda (her Black coworker and sign interpreter). She works as a cleaning woman for a high-security government laboratory. There, she bonds with the facility’s newest “Asset,” an amphibious, humanoid creature. They fall in love. Elisa, Giles, and Zelda then work against the laboratory to return the “Amphibian Man” to the water and save his life.

There have been critiques about linking disability to otherness. But what happens when you’re different all your life, even if not identified as disabled?  Autistic writer and reviewer Sarah Kurchak pulls the following quote from the film’s director, Guillermo del Toro, in Vanity Fair: “monsters are evangelical creatures for me. When I was a kid, monsters made me feel that I could fit somewhere, even if it was… an imaginary place where the grotesque and the abnormal were celebrated and accepted.”

Further discussion of (in)humanity and monsters

There have been critiques about linking disability to monsters. So what happens when you’ve always felt at least slightly inhuman? Kurchak notes in the review at Consequence of Sound that: “When the world sometimes tells you that you’re a monster, and when you love movies but can’t see yourself in the heroes, you might start to find yourself identifying with the monsters. And then you might start to find yourself wanting better for them. So you create your own stories for them, and for yourself.”

Chavisory says on Tumblr: “Whereas a lot of us who didn’t have those narratives…our minds filled in the blanks in some pretty interesting ways. Including various iterations of not being completely human. Obviously it’s a problematic movie, but I readily and pretty unconflictedly identify with aspects of both Elisa and the Amphibian Man.”

So, what might happens is that you identify with Elisa. Or the Amphibian Man, or both. Elisa, despite it being hinted that her childhood neck injury is the cause of her not speaking, is likely autistic. Maybe the film resonates with you and the representation is meaningful. For me that happened in the casual stimming, the way she moved, and within the first fifteen minutes, the scene where she first meets the creature. I saw in her and on her face the realization that she’s found another society deems “other.” The wonder of immediately needing to touch and use her hands to complete the recognition.

The protagonist Elisa, a dark-haired woman, leans over the tank with the amphibious creature. She has her hand hovering just above the glass, about to place her palm on it.

Watching the film, I had the realization I’ve found another society deems “other.” I found representation in The Shape of Water. I have always been the Other.  I have been the Other to the point of having a trauma history. And people are now saying it’s not representation at all because it is harmful in messaging. It is not without problems. It is still representation. And I have to wonder how many of these people have ever felt more than a touch inhuman. (If that’s you, then we can maybe talk about it differently).

Elisa found another outcast to see the possibilities in. Are you going to tell me that society should not start addressing how it treats those seen as monsters? Are you going to tell me that I have never felt inhuman from all the things the world has done and said to me, and that I do not deserve to have someone look past what has been painted on me as Other?

I do not think the film is perfect. I think it is still representation. But people are saying it is not representation at all. And when you say that, what I hear is that

those of us who struggle with feeling human in the face of the world, who sometimes identify with the Other and embrace it as a tool to survive, whose narratives and relationships to representation are messy and muddy the waters… should stop trying to find ourselves in representation or anywhere, our very existence and attempts at representation faulty.

We’ve been told that we’re faulty enough already, thanks.

.  .  .

Further Reading

• Chavisory, The Shape of Love: Cupid and Psyche and other considerations of monstrosity in “The Shape of Water”
  
• Sarah Kurchak, Film Review: The Shape of Water