Living the Umbrella Deaf-inition

This blog post is brought to you by some intensive reflection on leading with vulnerability, courtesy of Dr. Brene Brown. Her emphasis on removing your armor and allowing for vulnerability to be a part of who you are and how you lead is influential in my thinking about what it means to be an authentic leader within an equity-focused context. The views and perspectives shared here are deeply personal, and a part of my own journey. 

It has taken me decades to say “I am a deaf person.”

Growing up, I had a very narrow view of what deaf identity might mean, and saw myself as hard-of-hearing and totally separate from deaf people. As a child and younger adult, my main goal was to assimilate as much as possible into how the hearing world functions. 

I adopted a range of strategies to varying degrees of success: Speechreading, hearing aids, excessive preparation, relying heavily on context clues, avoiding large group settings, hyper-focus on the nonverbal signals, preferring independent work, and, later, text-based communications. This seemed to work, for the most part, both professionally and personally — but it was certainly never comfortable. 

Here’s a story that is a terrific physical manifestation of the cumulative impact of these experiences.

About three years ago, I was visiting a friend, together with my suitcase. The space behind the passenger seat was full, so I just put my bag on the floor and jumped in. It wasn’t a large bag, but there wasn’t much room. I was riding along for what was going to be an hour on windy country roads, completely contorted around the bag, with my legs up and over and my arms over my head, leaving me feeling nauseous. My friend and driver, also deaf, stopped the car. 

“Stop being so hard-of-hearing,” he said, shoving aside things in the back and making room for the bag, and room for me. He fully recognized the link between my contorted accommodation around the suitcase and my life-long compensation for my hearing environment at the expense of my well-being. 

There are many conversations in both academic and media spaces about what it means to be deaf. (Thank you, Sara Novic, for your writing about this!) I have now had the opportunity to work with many deaf people who have taught me, shared their experiences, and grown with me in ways that I could never have fathomed when I first started my career. 

Deaf, deaf, late-deafened, deaf with disability, hard-of-hearing…. There are so many different terms and identities that are under the broader umbrella of “deaf”. Identities are often fluid as we evolve and grow. There are many nuances of a deaf experience, including intersectional identities, that vary in different contexts and settings. 

Communication modality is often at the heart of this interface for deaf people. Because I voice for myself in some settings, but often cannot hear speech (or reliably hear it, if I cannot closely see the speaker), hearing people can be confused as to whether I have a hearing loss or not. 

She speaks, but she can’t hear? She signs, but isn’t a native user? The expressive and receptive language mismatch challenges assumptions about what “deaf” means, both for my personal identity and for navigating accessibility in a hearing-centered professional environment. 

For example, when I am at a conference presentation that has captions on videos and presenters who use the microphones, and an interpreter is available as needed, I consider myself a deaf person with full access to the information in the room.

When one or more of those important elements is missing — when videos are shown without captions, or when people say “oh, I am a teacher, I can project” and refuse the microphone, or when remote meeting participants are talking only through a speakerphone, or when the logistics of requesting a qualified interpreter are slow and unresponsive — well, then I feel very much like a not-hearing person left in a boat without a paddle in a hearing-centric experience. 

The COVID-19 pandemic has made variability in accessibility options and the power of decision-making about professional work even more apparent. 

For me, the move to remote work has actually been a huge relief. I can focus much more clearly on the presenter during a video call, interpreters have more flexibility in how and when they join in, and there has been an overall improvement in the accessibility settings on video conference platforms. 

Yet now with the partial return to campus while continuing to navigate COVID-19’s impact, the communication complexities and access implications are not only stressful, they shine further light on the undue burden that deaf and disabled people face in the workplace. 

Within a typical day, I will manage issues such as having to ask for auto-captions (craptions!) to be turned on, dealing with face masks that muffle speech and hide all visual cues, taking calls with both video and call-in participants, handling last-minute decisions to change to onsite meetings (and yet some people staying remote), and so forth. 

When abled people make decisions about communication modality without considering the impact on all participants, I am often left scrambling and managing unwieldy access support systems that are not designed to lurch from one setting to the next in real time, across a day with multiple varying, complex demands. 

Even when sign language interpreters are available, there are still access challenges. Interpreters without experience in highly technical or nuanced settings often cannot match the speed and complexity of the information. 

Also, because I am still a learner in my own use of sign language, I do not enter signing contexts with ease or confidence. Perhaps unintuitively, physical and mental stamina are critical to any successful interaction with my eyes and hands. This has been especially apparent (and often compromised) with the stressors of the pandemic. A long day with many meetings, eye fatigue, lack of food or sleep, emotional topics, a public appearance, unfamiliar signers, or even simply a new content area (with new signs) — each of these often tax me beyond a smooth reception and delivery. 

Interpreters who do not know me may not represent my thoughts as well as I would like, and often there is nothing I can do to repair mistakes that occur. Feeling limited in how I express and understand complex ideas is an extremely uncomfortable place to be as a senior colleague and a leader in the field. 

This unease extends beyond hearing-centered environments into signing-centered ones. I have learned to calm my nerves somewhat when the spotlight is on my delivery or comprehension of information in American Sign Language (ASL). Yet I carry with me the knowledge that I am always seen as and function as a non-native user. This reality has implications for my credibility in the community and in the field. Subtle or not, that evaluation is always there. And it’s usually in the form of judgment — of “not deaf enough” and never will be.

So, for each meeting, conference, or event, I have a decision to make. Prior to a few years ago, I would not ask for accommodations and just hope for the best, fingers crossed that my tried-and-true strategies would hold — yet again feeling like the contorted passenger with the suitcase. 

These days I have some options. I am forever grateful for the Deaf community and their gift of ASL. I value access providers and meeting coordinators who are proactive, and not reactive, in their thinking around full access for all participants. I appreciate my colleagues and students who are flexible in language modality for delivery and engagement, as needed. 

It is also more evident now than ever those who refuse to allow accessibility to be a factor in decisions, and what value is actually placed on my presence and participation when it requires a minor effort or adjustment on their part. I can say I have felt not just frustration but often rage in recent weeks. The long-term implications of these events are still yet to be realized. 

Embracing and living in one’s evolving identities is both exciting and, at times, unnerving. These topics are close to everyone’s heart, and it’s easy to feel as if there are few safe places to try out new ways of being, including how to be deaf. 

How I live within my own deaf identity is very public — it’s part of my research, teaching, and advocacy, and thus leaves me open to comments and questions about who I am and my efficacy. 

For instance, student evaluations of my teaching have included comments such as “it’s so boring to have to listen to an interpreter,” accompanied by a low rating of my competency as an instructor. Faculty evaluations have included comments such as “she’s a good teacher in spite of her hearing loss.” I am sure these biases are not recognized nor taken into account when people review my overall record. Sometimes I have the energy to protest and make this ableism transparent, but sometimes I just can’t tap into that depleted well yet another time.

I can only be who I am, and it will never be as a hearing person. I am happy to have a place under the deaf umbrella. 

I also ask myself: Where do we need to expand our umbrella to make it more inclusive? How do we amplify intersectional experiences? I see the impact, daily, of inaccessible learning environments on the well-being of disabled students, faculty, and staff. I am also very aware that my positionality as a white person means that I have access to systems structures and resources that my BIPOC disabled colleagues do not have. 

I believe that we can make room for each other by using our own spaces of privilege and social capital to advance access and equity for all. This takes intentionality, empathy, and engagement — and a community working together — to learn more and be better. 

I am forever grateful to my friend for stopping the car and taking the time to make sure I could be comfortable, putting the bag (and hopefully baggage) behind me. That moment provided valuable insight into how we sometimes do not even recognize our own contortions and need space for our own well-being. As I said earlier this year, take care of your human, okay? I hope we can build spaces with the generosity, kindness, and safety you need to be fully yourselves, wherever you are.