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Intersection of Black Lives Matter and Hearing Loss

Thursday, March 12, 2020

It was a minute before curfew in the aftermath of George Floyd’s murder, and I was anxious to get home. It had been a surreal Memorial Day week in Minneapolis. Entire blocks of the city, including a police station and a branch office of my employer, were looted and burned to the ground. Thousands of protesters blocked the freeway, and the National Guard had arrived.

I think back on that fleeting moment – anxiety about missing curfew and getting pulled over – and compare it to a lifetime of being profiled, detained, treated unfairly or even killed because of one’s skin color. As a white person, I don’t know what that experience is like. My mother once gave me an 8-inch chef’s knife for Christmas, and I inadvertently carried it on the plane home. The airport screener pointed it out but didn’t stop me. That is privilege.

And that time I made an illegal turn right in front of a police car. Friendly chat, no ticket. Privilege.

Privilege: A special right, advantage, or immunity granted or available only to a particular person or group

– Rebecca Knill, CI recipient

Hearing Privilege

What I’ve taken from the weeks of protest following George Floyd’s death is this: I need to try to understand the things I don’t know because of my privilege. It’s an opportunity to listen, learn and act.

But let me back up to February. Before the protests. Before COVID-19 isolation. When I left the whiteness of Minnesota winter behind for a week in Charlotte, North Carolina.

Privilege was on my mind then, too: hearing privilege. I was a presenter at TED@WellsFargo, and my TED talk focused on, among other things, “ableism.”

A woman with a cochlear implant gives a lecture

Ableism is discrimination in favor of able-bodied people, such as assuming hearing/speech is the only way to accomplish a task when other options exist. It’s a closed mindset that hinders innovation and squelches diversity. It separates us and them, and it perpetuates a belief that deafness is a dead-end existence, while overlaying unnecessary emotions – shame, apology, inadequacy - on hearing loss.

Ableism is not that different from racism. It’s a tendency to stereotype and marginalize; it’s presumptive superiority with a side of ignorance. It’s a prejudice that is learned but can be overcome with awareness and a commitment to change.

People assumed that the problem statement for my TED talk would be my deafness, and being fixed with cochlear implants was my solution. My actual talk: An ableist mindset is the primary barrier to inclusion. (And p.s.: I never thought I needed to be fixed, thank you very much.)

Don’t misunderstand: A cochlear implant is cool and awesome. I could spend hours raving about the amazing technological achievement that it is. The idea that scientists unraveled the keyboard of frequencies residing inside the cochlea is absolutely astonishing. Wanting to hear again is a perfectly valid choice. But so is being deaf.

Isn’t it funny how people assume everyone else is one envy away from occupying their privilege? I never aspired to be hearing (nor do I think people want to change the color of their skin). I did wish, though, that airlines would be more inclusive by displaying flight announcements visually at the boarding gate. It’s just not that hard, I wrote on hundreds of customer surveys when I flew every week for work. You already have the technology to do this. (I’m pretty sure Delta Airlines has a file on me.)

For most of my life, electronics existed in audio-only form, and even when adaptive devices were introduced, they were relegated to specialty store catalogs. But technology continually evolved. About a decade ago, Apple began integrating accessibility features into their design - mainstream products that would become a lifestyle brand – and technological innovation became the new zeitgeist.

Those advancements were seeded by the Americans with Disabilities Act (ADA), a civil rights law which took effect in the ‘90s, prohibiting discrimination based on disability. Post-ADA, designers discovered something remarkable: Solutioning for accessibility leads to invention, which leads to integration, which leads to inclusion, which leads to a bigger market share, if you just take ability out of its rigidly-defined box and ask the questions differently.

Personally, I see the box as a cliché-ridden wasteland, but that’s just me. I was profoundly deaf from birth, raised orally, and wore analog, powerful hearing aids most of my life. Like anyone with hearing loss, I know what it’s like to exist in a world that was designed for others simply because of a lack of imagination.

A turning point came in my twenties when an audiologist suggested that I learn sign language, meet other deaf people, and take advantage of assistive listening devices, rather than have to work so hard. For the first time in my life, I could finally be myself. It was a revelation.

I embraced emerging technology, from email and the Internet (remember Prodigy?) to the TTY, bed-shaker alarm clocks to FM listening systems. I found a baby monitor that blinked lights for sound and used it as a visual doorbell.

My quest for tech solutions included Advanced Bionics cochlear implants in 2003 and 2009, respectively, as a means of getting off the merry-go-round of progressive loss. What I got back didn’t matter just as long as it was stable.

Success Did Not Happen Overnight

I went to aural rehab for 10 weeks and trained my brain to adapt. It took three months to understand a single word without visual prompts. And when speech comprehension came, the irony was not lost that, out of everyone in line, I probably had the lowest expectations, and ultimately got results as good as they get.

The blog author with a cochlear implant takes a selfie in the snow.

Notice I didn’t say normal.

Because not hearing is my normal. Cochlear implants enabled me to hear, and I’m very happy with the results. But the implants didn’t fundamentally change who I am. My center of reference for everything – from information acquisition to problem solving – is still visual. 

While my perspective is different from those who experienced hearing loss after childhood, we share a desire for adaptive technology. “Late deafened” increasingly includes younger, tech-savvy demographics: Damage from everyday noise is now the leading cause of hearing loss, not aging. According to the Chicago Tribune, 17% of teens 12 – 19 years old have evidence of noise-induced hearing loss in one or both ears (hello, earbuds). It’s permanent and progressive.

In my future state world, every function in life would have a technological equivalent with multiple access options. Having to plug in my ears on a given day would be my choice, like changing shoes, and not defined by accessibility limitations. Maybe it could be controlled by a single operating system or smart home hub that learns my preferences like a Nest thermostat. I fantasize about smart glasses that transcribe speech to text in real time, including recognition of regional or foreign accents. And it would be integrated with my contact list photos so that I never forget another person’s name. (Actually, that last one is based on sheer laziness.)

My vision is not so far-fetched. Most of this technology already exists. Like the airlines in the ‘90s, the ableist mindset wonders: Why make an effort for inclusion? Why can’t the deaf just be fixed?

Invariably, I tell people to ask their question differently: Substitute another protected class for the word “deaf,” such as race, color, sexual orientation or gender, and see how that feels. Would you be comfortable saying that out loud? Would you cringe if someone else did?

I find people’s resistance to inclusion fascinating and simultaneously annoying. A dangerous byproduct of privilege is an inability to see outside of one’s own experience and expect the broom of tolerance to sweep everyone into a single box. Their box.

Diversity training in the ‘90s was originally about treating everyone exactly the same. But just being accessible (or diverse) doesn’t mean people feel included. It is our duty to rephrase the questions and say “I see you.” It’s our responsibility to be allies when other marginalized groups rise out of the box in which they were previously constrained.

When we identify where our privilege intersects with somebody else's oppression, we'll find our opportunities to make real change.

– Ijeoma Oluo, So You Want To Talk About Race

Incidentally, it was the black community who provided support for the Deaf President Now protests that shut down Gallaudet University in the ‘80s, and also partnered on disability civil rights in the ‘70s. That allyship is evident in Stanford Office of Accessible Education’s recent Statement of Solidarity with Black Lives Matters (BLM): You stood with us then; we stand with you now.

So much has happened in 2020. My goal for the rest of the year: To listen and understand viewpoints different from my own, while recognizing and working on my own bias. 

Rebecca Knill
Written by Rebecca Knill

Rebecca Knill

Rebecca is a writer, living in Minneapolis, Minnesota.  She is a bilateral Advanced Bionics cochlear implant recipient and had the privilege of beta testing AB’s waterproof Neptune processor while lying in her bathtub. Rebecca was selected as one of 13 speakers for TED@Wells Fargo, and her TED talk (“How technology has changed what it’s like to be deaf”) has been transcribed in 11 languages to date. It can be viewed on the TED website at go.ted.com/rebeccaknill.

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