Written By: Lauren Goldberg
This piece is about overcoming internalized ableism, shifting my disability from diagnosis to a proud part of my identity, and loving life (and myself) in a disabled body.
I identify as a white cis-gender woman, who grew up upper-middle class, in one of few Jewish families in my mostly white, suburban, American hometown. I am proudly neurodivergent with ADHD and dyslexia. I am proudly deaf. I feel it is important to share this as context for my story, in recognizing both my unearned advantages and disadvantages.
“Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.” - Ashley Eisenmenger, “Ableism 101,” accessliving.com
My father just ordered his first pair of hearing aids. He’s 71. He wrote to us in our family message thread, “So I’m officially old.”
My heart hurts to read it because, beyond his fear of aging, I can sense the fear of disability. Fear of non-able-bodied-ness. I think that’s why he put off getting his hearing checked for so long. Maybe he was afraid to finally have someone confirm that he was losing his hearing.
Loss. Lack of. Less than. That’s what we are taught to fear.
It is a reminder of my upbringing, the ableist thinking I was conditioned to believe, the deeply rooted internalized ableism I had, and how much of it I have uprooted. Excavated. Unlearned.
I have a completely different relationship with my body and my disabilities now. But my disability is not new. His is. Maybe he’ll get there too.
This is my father’s first pair of hearing aids. I’m on my fourth pair. I’m about to turn 33.
“What? Me? I knew my hearing was a little off, but needing hearing aids?! They are so NOT cute.”
This is what was going through my head as an uptight teenager when the audiologist told me I have bilateral (meaning in both ears) sensorineural (meaning nerve-related) hearing loss and would benefit from hearing aids. For those who want assistive technology and can afford it, it’s a privilege. But I wasn’t thinking about that at the time.
Well, at least, I finally had data to back up my arguments with my mom.
Mom: [Says something that sounds like she’s underwater]
Mom, frustratingly: Lauren, you’re not listening to me.
Me: Yes, I am! I am looking right at you! I just didn’t hear you!
My hearing capacity dips in the middle decibel range, which includes the sound of human voices.
Despite my initial hesitation about getting them, I was grateful for my first pair of over-the-ear hearing aids. Not only did they help me hear, they were so small and the same light brown color as my hair so few people would notice them. At the time, this was a relief.
Small, camouflaged, unnoticeable, something to keep hidden . . . something shameful.
That’s all I knew. And this was internalized ableism.
Now, in my 30s, with my fourth pair of hearing aids, I did not want small, camouflaged, unnoticeable.
No, fuck that. I wanted them loud, bright, in your face, very noticeable. Something to celebrate. Something I want people to know and know right away.
My hearing aids now are bright pink (my audiologist admitted, “We’ve never had anyone get pink hearing aids before”) and I added a decoration that spirals around the front tube, which I change depending on what color suits my mood.
Visible. Vibrant. Noticeable.
I did a photoshoot recently for branding photos for my coaching business. I told the photographer I wanted some of the photos to be like a hearing aid fashion show. I’m thrilled about how they turned out.
Why the big difference between when I was 17 and now that I’m 33? How did I get from there to here?
Almost 17 years since my first pair of hearing aids, my deafness has progressed and my once on-and-off tinnitus (a ringing or buzzing noise in one or both ears you may get after a loud concert, often associated with hearing loss) is now constant - it impacts my in-person interactions significantly more. People ask me, “Can you read lips?” Well, even the best lip readers only understand a fraction of what’s being said.
I’m all for safety, but the reality is when people wear masks as often as they did at the onset of COVID-19, it was almost impossible to understand people in person with the extra muffled sounds and lack of facial cues to help my brain piece the context and broken sounds together.
“Broken.” Interesting word. A word I associated with myself and my body for a long time.
I knew that’s not how I wanted to see myself. But I wasn’t quite sure how to feel about it otherwise . . .
In May 2020, I signed up for my first American Sign Language (ASL) class. I was curious to learn, even though I didn’t know anyone who knew it and used it. But I knew that if my hearing loss progressed, it could be another tool for communication in the future, and better to learn it now than later.
Little did I know this would change the entire way I see myself and my relationship with my body and my disability.
Taking my first ASL class opened up my mind to something of which I knew very little: Deaf culture. At the time, I had not even used the word “deaf” to describe myself. I had not even felt comfortable using the words “disabled” or “living with a disability” to describe myself (I didn’t know if those were bad words. They’re not, by the way). Again, ableism - it’s all I knew.
In the 12 years prior, I had used the words “hearing impaired” which I later learned was not the preferred term of the deaf and hard-of-hearing community. It centers on hearing people and the comparative lack of hearing, versus language centering on the person with the disability. I learned that Deaf with an uppercase “D” is an identity used by those who grew up in the Deaf Community, often coming from a family of deaf people, and often using Sign Language as a primary way of communicating. Lowercase “d” in deaf for those who grew up mainstream, going to primarily hearing schools, and have fewer ties to the Deaf Community.
I also learned about the different models by which people view disability and deafness. In mainstream culture, we view disability as a medical diagnosis, something to fix, something that is not desirable. In Deaf culture, deafness is not a diagnosis, it’s an identity.
This completely shattered the glass for me.
A disability can be a diagnosis, but it can also be part of our identity. Our culture. The Deaf community could be considered its own ethnicity given its own language, heritage, and customs.
What I had internalized from my upbringing, my schooling, and my existence in mainstream culture was that my body was inferior. I was diagnosed with ADHD and dyslexia at 8 years old and struggled in mainstream school. Then I received my hearing loss diagnosis in high school. I internalized all the messages that it’s undesirable to operate differently, have needs beyond the system designed for able-bodied people, or not fit into the Westernized view of the perfect human body. I did anything I could to show that I was perfect. To show that there wasn’t anything seemingly “wrong” with me. This is internalized ableism.
Since I was 8 years old, these beliefs had me in a chokehold.
And now, with the exposure to Deaf culture, disability justice, and meeting and following other disabled people thriving online, I could finally see there are many other ways in which humans can thrive in the world.
It took me decades of living with disabilities to recognize and deeply believe something really big and important:
My disability does not make me less than. It’s a part of who I am and why I see the world the way I do. It gives me a powerful perspective. It allows me to connect with others in unique ways. People with disabilities struggle because much of the world is designed to be inaccessible, designed for able-bodied people.
Disability is not something to overcome, ableism is.
I live in a disabled body. And I’m proud of who I am.
It took me a long time for me to say that both of these statements are true.
It is estimated that one in every four people in the United States, and one in every five people worldwide have a disability. That makes us the largest minority group in the world. Julie Harris, a disability advocate, says there are people with disabilities and there are “people who are not-yet-disabled.” Even if we’re not born with a disability, we will experience disability, temporarily or permanently, at some point in our lives. The question is how will we view disability?
In response to my dad’s text message about getting his first pair of hearing aids, I shared a popular saying within Deaf culture:
“It’s not hearing loss, it’s deaf gain. You are welcomed with open arms to the club.”
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