Being anchored to a machine
when I don't want to be.
Welcome to “Portal Hopping,” my mostly-monthly newsletter where I write about art, Disability and other things that rise to the surface of my heart.
When I was in Elementary School, I remember getting the first variation of the hearing aid I have now, a BAHA (bone anchored hearing aid.) I had to go through two invasive surgeries where a titanium screw was implanted into my head in order to receive this hearing aid. This started the process of my physical body forever being linked to technology. All of my hearing aids as a kid and teenager were self-sufficient, relying on their own machinery to change the volume. In High School, I got this chord that allowed me to plug my hearing aid into my iPod. I was finally able to listen to music privately. I felt excited about this possibility. Before the BAHA, I relied on other bone conduction implants, which were just velcroed onto a headband to hear. I grew up in a small town, where ASL wasn’t accessible nor even thought of. I remember when I was a child watching Linda, a Deaf person who only communicated through sign on “Sesame Street,” and wondering why I wasn’t using my hands to communicate. I remember adults telling me I didn’t “need” sign language. I was simply raised on eugenics.
After High School, when it was time to get another new hearing aid in my 20s, the latest BAHA model started linking to my phone just through Bluetooth. I no longer could change the volume on the device itself, I had to go through an app, to change settings on the hearing aid.
At first, this was fine, it was a novelty. There was so much advancement compared to when I was in fourth grade. I had the opportunity to have more phone conversations and stream things. Tying this with becoming more interested in Instagram or social media, I was blissed out. The older I get, the more I become frustrated with how linked I am to technology. I am now dependent on this device, an expensive device that is finicky, that can’t just be out in the rain, to communicate with others. I have been learning ASL for about a year now, but between my own brain fog from Long COVID and just my age, it feels more challenging to retain signs let alone have the motivation to practice when I can only sign with a handful of sweet loved ones around me.
The world is loud, both auditorily and collectively. A few years ago my hearing aid broke, just as I was trying to apply to get a new one through insurance. Insurance of course denied my request the first time, to which it broke shortly after in the midst of appealing their denial. I then had to try to make doctor’s appointments to which none of them could just be made virtually; they all had to be made over the phone. I didn’t know any sign language at the time. I was thankful to have my partner with me to help call doctor’s offices, but it made me realize just how quickly isolated I am in such a vulnerable situation when my hearing aid can no longer work. I urgently raised funds to get a new hearing aid, and even though it was tough to communicate without it, spending a significant amount of time away from hearing was something I enjoyed. Getting my new hearing aid, was overwhelming. I was hearing sounds I hadn’t heard before.
It feels like some hearing/non-Deaf people expect me and other Deaf folks to have this miraculous reaction similar to those viral “let's give the baby a hearing aid for the first time” videos, and don’t get me wrong, there are a lot of pleasures I have when it comes to hearing, and yet, I love being Deaf. I love silence. I love the fact I have a choice. I never had a choice not to hear growing up as a kid. I always had to have my hearing aid on. It felt at times that me having a hearing aid was more for the ease of other's than myself. As if, if people could just mask me very well, give me a hearing aid, give me years of speech therapy to lessen my “Deaf-voice” then I could just be “seen” as another member of society. That I could just not have to inconvenience others for learning a new language that could benefit me and potentially others they encounter. I had to be put in other’s boxes. The thing though, is that even with my hearing aid on, I am still very Deaf. The hearing aid isn’t a perfect solution. It felt and still feels at times like a people-pleasing one. As I see the continuous uptick of eugenics in the United States and further Disability rights being taken away, I sit in the discomfort that a lot of my upbringing was a part of eugenics as well.
In their recent piece for ‘The Gaurdian,’ author
wrote, “Leaving disabled people behind is not new to the American political landscape; the US has a history of eradicating the disabled. Eugenics – the pseudoscientific belief that humans should breed for ‘desirable traits’ and suppress the undesirable ones – rose to popularity in the US and globally during the late 19th century.The first eugenics-based law in the world was passed in the US: Indiana’s 1907 Act to Prevent the Procreation of Confirmed Criminals, Idiots, Imbeciles and Rapists targeted disabled people in state schools and institutions and incarcerated people by mandating sterilization for ‘criminals, idiots, rapists and imbeciles in state custody’. The Nazis would go on to praise the US’s codified eugenics and racism in their 1934 handbook.”
Growing up, I naively played along with people who were trying to hide my Deaf identity. This, in turn, made me not advocate for myself in ways that would’ve given me greater access to crucial things.
Now that I am settled into my new hearing aid after a couple of years, I have noticed how dependent it has made me to my phone. As mentioned before, my hearing aid is solely programmed through the phone. I see many non-Disabled people sharing “hacks” to less screen time by just getting a flip phone and I find myself having envy to do the same. I am coming to the realization, too, that, like so many other things in the United States run by capitalism, the upbringing I had was to make sure that I was solely self-sustaining and not as reliant on the community. There are reasons why hearing aids are designed to be discrete. There are reasons why companies want you to be dependent solely on their hearing aids instead of possibly using both hearing aids and sign language to communicate. This isn’t only the case with hearing aids, but other mobility devices as well.
When I was younger, I didn’t recognize some of the eugenics I was surrounded by, but as I continued to learn the history of Disabled & Deaf people, things clicked regarding my experience. I am ramping up my education in learning ASL, even if I can only sign with a select few people. Our phones make us too available to others, and I believe being Disabled does too - but not in the sense of accessibility but more so regarding strangers thinking they can have access to us educating them. I find it terribly ironic that the inventor of the telephone was also deeply for erasing the identity of Deaf & Hard of Hearing people.
In ASL classes, my Deaf teachers share about how uncomfortable speech therapy was, how difficult hearing tests were, and how they put away their hearing aids for their own autonomy. It’s a strange feeling to feel these things too while also acknowledging that I didn’t feel I had the choice to voice such discomfort as a child.
As we continue to snowball into this year, I see the erasure of Disabled people only becoming clearer in ways that are more upfront in our political landscape. I saw the snowball start to form as a child, for myself, and I avoided it for a long time. I tried for years to fit into a box, that now feels incongruent with who I am. “Over the past five years, we’ve already seen what happens when ‘the vulnerable’ are left at the mercy of unmitigated disease. It doesn’t make those around them stronger while purging the population of the disabled. It makes everyone sicker, while creating more disabled people than ever before. Eliminating vaccines, ignoring disease mitigation, cutting infectious disease research, banning pharmaceuticals, and institutionalizing people will bring more of the same,” says
from their recent Substack post.These devices can support us in some ways, but they also make a lot of Disabled people unassuming when it comes to them being Disabled, which in turn can create deep harm. The amount of times I have had people frustrated with me because I couldn’t hear them or asked to repeat something before having to tell them I have a hearing aid, is astonishing and consistently on-going. As a child into my young adulthood, I took this weird pride for not “seeming” Disabled. I no longer have that pride now, and I am grasping to reintegrate my true nature, that of being born Deaf.
Not “seeming” or “looking” Disabled isn’t something to gloat about, it’s just playing into society’s overall avoidance of Disabled life.
I am not a smart-device or computer just because I have a machine lodged onto my head. I don’t want my hearing aid on all the time. I don’t want it tethered to my phone.
Not leaving Disabled people behind, to me, looks like accommodating them more than you trying to get them to fit into your able-bodied box.