This June is the second anniversary of one of the most horrific and traumatic times of my life. After several weeks in the ICU and almost dying several times, I came home from the hospital with an irrevocably altered body. I was left with an even more disabled body, the latest iteration from my progressive disease, leaving me unable to eat, drink, or speak. Being part of the disability community for decades, I had no idea I would become a user of augmentative and alternative communication (AAC), a range of communication methods that replaces speech or writing for people with various disabilities like cerebral palsy, autism, or Parkinson’s disease.
While in the hospital, communication access was one of my major priorities before I was discharged. A friend connected me to CommunicationFirst and one person from the organization suggested a text-to-speech app, which is what I currently use. While it has its limitations, like any form of AAC, I liked that I could use it on my smartphone. When I got home, it took me a long time to get myself situated back in my wheelchair. I had to find the right clamp that could attach my phone next to my joystick since I will need it close to me forever. My phone was important to me in the Before Times but now it is a vital appendage allowing me to communicate with the world.
As I tried to adjust to my new body. I had to adjust to the way I presented myself to the world as a nonspeaking person. I had a new disability identity and was part of a new segment of the disability community. It was a bit intimidating being an outsider who is slowly easing into a new way of being while still mourning my voice, which expressed so much of my personality. I entered a world where time has slowed down. Conversations are now stilted, extended in a way that gives me anxiety and pressure to keep up with normative speaking speeds and patterns. Even with my family when we are guffawing about something, by the time I type a banger of a remark, they have already moved on to another subject. Although I am not excluded by my family, I am still left out.
In the old days, words tumbled out of my mouth like Niagra Falls, a torrent of thoughts and ideas. I now find myself saying less, skipping certain parts due to time constraints, which feels like editing my personality out. When I’m with strangers, the calculus changes. I have to explain that I am nonspeaking and pray that they don’t freak out, or become filled with pity, or impatient. I am now constantly editing, thinking of what to say, typing furiously on the phone, and orchestrating my social interactions, which creates a huge cognitive load.
When I was younger, internalized ableism forced me to work harder and achieve more as if that would give me respect, credibility, and equality with nondisabled people. While I don’t care about what nondisabled people think of me anymore, I am working through the internalized ableism of valuing one mode of communication over another. I miss laughing and all the sounds I can make that you will never find in an AAC glossary and mourn the loss of my voice. Adaptation is one constant in my chaotic, disabled life.
The ableism, microaggressions, and discrimination I experience are greater now with my additional disability. This past January, I went to the emergency room because my feeding tube became clogged and my abdomen became rigid and tender. As I wrote in a previous column for Teen Vogue, there was so much I needed to say about my pain before and during the procedure to change my tube but I couldn’t. My phone was not allowed in the room because of their infection-control protocols and my caregiver, who could read my lips, could not join me. I wanted to scream, beg, and wail and tell people how much pain I was in. If only these health-care providers could sense the terror of not having your AAC device for two hours or even a minute. I was in the hospital for only two days, but the experience left me shaken and vulnerable. I am still processing the trauma.
The essay Six Ways of Looking at Crip Time by Dr. Ellen Samuels resonated deeply with me in the Before Times and it speaks to me even more deeply now from the vantage point of a newly nonspeaking person. “ Crip time is broken time,” Samuels writes. “It requires us to break in our bodies and minds to new rhythms, new patterns of thinking and feeling and moving through the world. It forces us to take breaks, even when we don't want to, even when we want to keep going, to move ahead. It insists that we listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us while also pushing it beyond its limits. Crip time means listening to the broken languages of our bodies, translating them, honoring their words.”
To crip something is to bend, compress, twist, subvert, and imbue disabled wisdom into systems, institutions, and cultures. As I’ve done before as a physically disabled person, I will now crip the world mightily with the multiple perspectives I have as a disabled, nonspeaking, ventilator-dependent, high-risk Asian American woman. It takes a tremendous amount of emotional and physical labor to crip the world. Like a baby snail, I am slowly becoming more involved with the AAC-using community, exploring and discovering new branches of lived experience. From what I’ve learned, the power of community is more important than any software update to my text-to-speech app or another new intervention.
Ableism is baked into our society, and AAC users face many challenges in public life. But we belong in public, holding court in conversations, doing our thing, having our access needs respected, and being our full selves unapologetically. I am a baby AAC user and am still evolving, discovering new aspects of life without speech. AAC users can collectively bend conventional modes of communication, practice crip time, teach speaking people to slow down, and have us centered for once instead of at the margins. That’s my dream so that other newbies don’t have to experience what I did.
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