Hi! Hope you don’t mind me chiming in. I can relate a lot to what you’re saying and I think writing about it will help me to figure things out for myself and hopefully help you a lil. So I’m sort of replying to you & sort of just ranting into the void here.
I grew up knowing I’m hard of hearing & with HAs in both ears my whole life, yet I also didn’t really /know/ I had a disability until about your age bc I’d been mainstreamed, and disability is not well represented in our society to such an extreme degree that that’s a thing we both experienced. I don’t think others percieved me as disabled, and I certainly never got that idea from them myself. I definitely felt a sense of “other”ness, but the idea of identifying as disabled never crossed my mind until I was older. Plus I didn’t know about Deaf people having their own Deaf culture until about 19, and have spent the last year and a half trying to navigate where I fit in with all that & learn about it.
(Disclaimer, I’m in no way an expert on this, and in some ways am still as uneducated as any random hearing person may be on this subject, so ppl reading who are qualified, correct me if I’m wrong abt anything or speak incorrectly about it) Most culturally Deaf people don’t consider themselves disabled, because what is their “disability” is also the foundation of much of their way of life. Their language, how they interact with each other and the world, surrounds their deafness, but they are still perfectly capable of navigating the world the same as a hearing person can, which is not what most ignorant hearing people would assume. Thus for them it’s not a disability, it’s their culture and way of life. It makes perfect sense to me, then, why Deaf/HoH ppl wouldn’t consider themselves disabled - not even out of any sense of ableism, but just because the ability to hear is simply not something they need (or want) in order to live their lives and navigate the world. Ask most Deaf people if they want to be hearing - a resounding “no.” (You prolly know all this already, but if you didn’t now you do!)
For me though, I didn’t get the advantage of a signed language, not even PSE or SEE and certainly not ASL (I had speech therapy as a young toddler for like, a year, and was taught the ASL alphabet & some basic baby vocab, but that’s it). Closed captions were like a special treat when they were available, and asking to have them on in class (which I didn’t know I was really allowed to do until hs) inevitably meant a groan from several classmates. I also have had to personally tell my teachers/professors I’m hard of hearing, and it only makes a difference sometimes. Video/Zoom lectures with no captions suck. Everyone I interact with speaks orally (plus they all wear masks), and even if I did interact with an ASL speaker, I never learned it myself.
My deafness, while it’s a huge part of who I am and I don’t think I’d give it away if I had the chance, really does hinder my ability to do certain things, thus I consider it a disability. I identify as disabled. My deafness will never go away and may only increase with time. But! that doesn’t mean that I and others can’t learn tools to lessen those hindrances I face. And over time, as I add those tools to my belt, and as the world around me becomes more accomodating, I wonder if I’ll see it less and less as a disability. I don’t know. But it makes me wonder, would anyone consider themselves disabled if the world was accomodating? If people knew ASL, if printed money had Braille, if people had more empathy for those with chronic pain on their bad days and good days, if abled people didn’t stare at or completely ignore users of mobility aids, but just genuinely treated and saw them like they would another abled person, if the world didn’t separate “abled” and “disabled” so much and accesibility was the norm, would anyone consider themselves abled or disabled? Would it even matter?
All I know is many disabled people take pride in being disabled, and that I take pride in being hard of hearing. For me, right now, that includes taking pride in my indentity as a disabled person. many people wouldn’t even consider me to be “disabled enough” to be disabled, or they wouldn’t consider me to be “deaf enough” to call myself deaf/hoh, bc I use aids, and many more others think calling myself disabled is derogatory to myself, or just wrong. I agree that this world needs to stop being so strict on its measurements of who meets what standard to gain respect and understanding. Some days I process things better than others. I do not always have my HAs in. I don’t need an interpreter, but I do need CC. Yet I deserve as much respect and understanding no matter where I’m at. Same goes for someone who needs a wheelchair, but only sometimes, and the same goes for you.
OP, I hope you continue to explore this with yourself, and give yourself the respect and understanding and patience you deserve! Talking/listening to others with similar and different experiences alike has been very helpful for me. There are great d/Deaf communities on Tumblr, Twitter, Reddit, and Tik Tok (the latter two especially are great for specific questions/info, imo). Don’t feel pressured to identify one way or another, and be a self advocate (that one can be really hard, especially the younger you are). Remember that the problem doesn’t lie with you not being able to hear/understand, but rather with others not being willing to meet your accesibility needs. Do lots of research, especially in regards to aids, and make sure the final choice is always yours. Others have to respect that no matter what it is. Finally, know your experience was not an isolated one. I and many others have had a similar story. I didn’t know this until the last couple years and I wish I’d known earlier.
TL;DR I agree that our standards of who is or isn’t “disabled” enough are fuckin wack, I think accessibility and disability should be the norm, calling oneself disabled shouldn’t be seen as a negative thing bc it can refer to so many different people’s experiences and all are worthy of respect and empathy. I’m hard of hearing but not culturally Deaf & grew up mainstreamed like you, so I consider my deafness a disability, but that may change in the future as I learn more about ways I can navigate the world better. Hope this is cohesive and helpful
