My existence isn’t here to make you feel more grateful about yours.

Embody the world you wish to exist in.

Image Description: An illustration of a large abstract character that is formed from a plot of grass. The character emerges creating a slight mountain-esque form. They have two arms and a face, their arms are slightly raised to show their hands forming two streams of water that are flowing on the plot of grass (their body.) Little abstract heads & stars are floating in the streams of water. Trees are growing on top of this figure’s body. The abstracted character has a heart shape in the middle of their body. Mountains are faintly behind the character and stars & abstract faces are sprinkled in the sky above the character. On the ground, “embody the world you wish to exist in!” is handwritten.

I often sit with how much I choose to share regarding my own medical experiences, especially considering how Non-Disabled people may view Disabled stories. There have been times when I’ve felt exhausted after sharing a deeply vulnerable part of my life, only for someone to chalk it up as “inspiring” or for them to tell me that “well, I thought I had it bad, but thank you for sharing your story, it makes me feel better about my own ‘obstacles.’”

My trauma isn’t here to make you feel better about yours.

My existence isn’t here to make you feel more grateful about yours.

I sit with all of this as I have been processing my recovery and how different things felt as I advocated more for my own autonomy in my body while in and out of the hospital. I’m in a place where I am fully recovered from my subdural hematoma last November, where I’m gathering with loved ones again, sharing what’s been going on in more detail than I share with the general public. I’m in a place where I’ve gone back to my routines that involve moving my body. Recovery took time. It took so much work, conflict, and frustration. It took me advocating for myself in ways that were really uncomfortable. I had to practice the things that I had been working on for years. I was no longer shying away from my physical pain in the midst of my body adjusting to its changes. I had embraced voicing my discomfort instead of hiding my discomfort for the comfort of others. In reading one of Marlee Grace’s newsletters, I really loved this excerpt from them:

“I may have not been able to participate in a project that is tied to the coolest movie ever made, but I did learn a lesson in capacity. I learned that if I am not telling the truth to myself and to others, I will fall apart. And in this falling I may miss opportunities to share my gifts with the world. Abandoning myself serves no one in the end, and I am grateful today to be on my path - truth telling even when it’s uncomfortable.”

I had been abandoning myself for as long as I remember, and when I started really moving forward to cultivate more bodily autonomy, things didn’t align immediately for me. It wasn’t a quick fix, and I am still in this ongoing process of having a relationship with my body. This relationship requires me not to abandon myself, contrary to my childhood belief.

I just started taking in-person ASL classes with my partner, and in class, I decided to take my hearing aid off. The class is a no-talking space where we must sign or write down things. Earlier last week, I randomly met a kid who has a BAHA like myself, which was surreal to me because I’ve never met another person who has the same device as me. Their mother was telling me that they currently weren’t wearing their device. It made me think about how I felt this pressure to always be “on” as a kid and young adult. To always have my hearing aid on. Part of this pressure was because I didn’t have the proper resources to communicate alternatively. It’s taken me 31 years even to learn a language that is ultimately for me, ASL. During last weekend’s class, while having my hearing aid off, I found myself really tuning more into my body in ways I hadn’t done before. The codependence of my hearing aid didn’t appear in ways it had in other instances without me wearing one.

“I think when the goal of the assimilation is to cure, or to fix, then it’s always toxic. It seems to be not about welcoming others’ perspectives, and how their bodies may even be more adaptable and better in certain situations. So, anytime assimilation centers this hierarchy of bodies rather than seeing all bodies as people and encouraging curiosity of their differences, then that kind of assimilation becomes dangerous and toxic,” Chella Man.

I’ve said this before, but it bears repeating, my hearing aid isn’t a cure. It’s a tool; it’s here to assist me. It’s not perfect by any means. It’s sensitive to rain and water. It’s not fun to wear all the time. I still have to ask people to repeat themselves. I can’t differentiate where certain sounds are coming from. I receive micro-aggressions for these technical faults. I’ve been told people would say “hi” to me, and they felt I was rude for not responding when I simply couldn’t hear them. I pass so much as a hearing person with my hearing aid on that people can forget I am Deaf. I used to pride myself on passing as a hearing person, but I no longer do. Assimilation doesn’t make me proud; it makes me part of eugenics.

I remember being a kid, not seeing a proper representation of who I was or wanted to be, and feeling that I needed just to be “normal.” That these surgeries I was having were to make me like everyone else and look “normal.” I remember after having major surgery, walking down the street of my neighborhood, and a neighbor who had known I was receiving surgery just telling me, “oh, you finally look normal!”

Improper representation creates harm, and this mindset I had was so deeply harmful to my own being. The more I started dismantling the majority of society’s narratives about Disability that I saw being reflected onto me, the more I felt comfortable in my Disabled body. The more embodiment I cultivated, the more I understood that I am Non-Binary.

It’s taken time to let go of this conditioning, and I still see remnants of past internal ableist beliefs playing in my head. In the dismantling, I notice my loved ones dismantling their own internalized ableism as well to get their access needs to be met.

I can’t ponder what it would look like if these revelations came to my heart sooner; I know I have these feelings now, and I am driven to ensure I or others don’t erase my voice. I try my best to show up in the world as a reflection of how I wish this world could be. I do my best to learn things, such as ASL, that will serve my well-being and my Disability now, even if those resources weren’t available to me as a child. I can physically show up in the ways I have wanted to appear as, as a Non-Binary person. I can use the pronouns “They/Them” that best represents who I actually am.

These revelations can feel scary at times, especially when the world tries to repress a vast majority of those who don’t follow the narratives the world is trying to instill. Even with the fear looming, I am excited to continue to learn about myself in new ways for me to show up authentically in the world and for others.

Here are some questions to sit with through journaling, art making, or just self-reflection if you wish to do so:

• What do you wish to learn about now that you never had the opportunity to learn about as a child?

• Has there ever been a time when you’ve felt misrepresented that has impacted how others interact with you?

• Is there anything in particular that you feel you need to advocate for in your or a loved one’s life? If so, how can you do so?