My Deafness and Disabilities
A Project Keller Article
Written by Ervald
Hello, everyone. For a while now with some presidential candidates, I have talked about the idea of launching “Project Keller” which would be a series of articles focused about NS users with disabilities. I wanted to do this months ago but was busy with graduating from college and was having trouble finding other disabled NationStates (NS) users so I decided to launch this with a reposting of an old article of mine from 2017, “About My Hearing Impairment”. I am going to repost that here in spoilers and talk about how different my experiences have been and how my perception of my hearing impairment has changed over the past 7 years.
But before that, why Project Keller? Well, I was inspired by Project Moirai and Project Athena and I felt that NSers with disabilities need a highlight too. From my experience in both NS and in real life, there are a lot of misconceptions about disabled people. I have been the target of both people trying to tell me to just “get over it” in a puritanical manner and also baby me as if my disability made me unable to do anything on my own. And like other marginalized communities, there are many disabled people who don’t speak about it or don’t even realize they’re disabled. And when people live in an environment where they don’t feel like they can freely admit they are disabled, we are all worse off for it. And that can bleed into NationStates, even if it is just an online environment. I believe that Project Keller, named after Helen Keller who was a famous deaf and blind disability rights activist, can push us in a direction where folks can feel more comfortable talking about their disability and their perspectives can improve NS.
Here is the repost of the aforementioned article from 2017.
(Europeia - November 19, 2017) - Hi, guys. So, for those who know me pretty well would know I have a hearing impairment. I might mention how I became hearing impaired, but when I talk about my condition, it is usually about why I don't feel like getting involved with Mixlr much or lamenting a TV show or movie they recommended is not available on a streaming program with closed captions. For the most part, I usually mention it casually when we're joking around in EuroChat. So, I decided I wanted to tell you all more about my hearing impairment.
The reason I decided to do so was for two main reasons. One, our college guidance counselor came into my class yesterday and mentioned about essays. She said that a thesis talking about obstacles or a unique condition you have can be great for an essay topic. I am not going to write up an essay about my hearing impairment right now but I figured out a post like this could be good to look at later and use for constructing the essay when I do. Two, I know when it comes to hearing conditions, we usually talk about senior folks having a hearing impairment which is great for jokes and deaf people using sign language. We certainly talk about people having hearing aids but sometimes I feel like we may not have a great image in our mind of what it is like to have one. Maybe you do, I just don't. Regardless, I am going to talk about it so you all can have a better idea of what my hearing impairment is like.
I was not born with my hearing impairment. I became hearing impaired when I went under chemotherapy to combat my liver cancer which I have mentioned to many of you about having. One of the common side effects of having chemotherapy, especially for children, is hearing loss. You can also lose your hair from chemotherapy and I lost all of my hair in my two ears which are used for people hearing high-frequency sounds. I got hearing aids not long after. My hearing aids certainly helped me but they are not remotely close to a miracle like how someone with blurry eyesight can get glasses or contact lenses which usually fix the issue.
Like someone with glasses, I have to take my hearing aids off at night because it is just a bad idea to unnecessarily leave the battery running all night. My family doesn't have the financial disposal to buy water-proof hearing aids so I also have to take them off when I get in the water or take a shower or cover my hearing aids with my hands in the rain when I forget to bring a rain jacket. When I have my hearing aids off, I am close to being deaf. My mother wakes me up in the morning for school by not just yelling at me or shaking me, she just turn on the light in the room and I wake up. I don't really talk in the morning when I don't have my hearing aids on and the music coming from the radio sound like someone tried to copy the instrumental portion of songs in a terrible attempt.
So, what is it like when I have my hearing aids on? Much better, arguably. But before I talk about the sounds of my world, I have to describe my hearing impairment. I don't have fancy charts but I do know what my parents have told me. If you looked at a chart of my hearing by frequency, it looks like a banana said, my parents. My hearing impairment with high-frequency sounds is profound, it is severe with medium frequency sounds, and it is mild with low-frequency sounds. Going along with that, let me describe how I hear the world. I can mostly hear the background such as vehicles and construction noise and the blending of the coffee machine but of course, they are loud. If you took me to a forest and say "Can't you hear the crickets?!", I would just say "No, but I can vaguely hear some birds." Another great example of an everyday high-frequency sound would be the fire alarm at the school. I hear the alarm but I can't really hear the high pitches of it and I feel no need to cover my ears.
Now, here is the messy part. Talking to people. The best analogy I would come up with would be listening to a presentation or a speech. Most of us would try to be as attentive as we can while listening to a speech and we just relax when we're not but I have to try to be attentive 24/7. Of course, that doesn't really work out and it leads to awkward but sometimes funny events when I am having a conversation. I don't do well with the low-pitched sounds such as "th", "s", the soft "f", and I get my "v" and "z" mixed up when I am listening. I am doing speech therapy to help me with that but of course, it is something you have to work at all the time. Another issue in conversations I have and I honestly don't know why it happens but I sometimes mishear a word for something different or my ears even decide to omit a word. I believe this is most likely from the difficulty of trying to be attentive 24/7. It can sometimes be annoying when I misunderstood an assignment in a classroom or even funny when I thought the friend I was talking to said something completely messed up when they didn't. When it happens, I usually ask them to repeat what they said and worst-case scenario, they just type it down on their phone and show me what they were trying to say that I couldn't understand. The one time you should never try to talk to me is through whispering. You have a 1% chance of me understanding what you're trying to whisper. Otherwise, just wait or send me a text.
Texting. For some, it is a great system of communication and for some, it is an annoying trend taking over the world and destroying the sanctity of calling. For me, it is a godsend. It is the only way I can communicate using a phone and calling is not really an option for me. Even when I put it on speaker-phone at the highest volume which I can't do in a public setting, I STILL have trouble understanding what they're trying to say. This is not really an issue but it can be when the telephone rings at home and my mother found out that my grandma was trying to call her. It did use to be awkward when I didn't have a cell phone in elementary school and the only way I could contact my parents was having the teacher using the phone to repeat what I am saying to my parents over my phone which was just cringe-worthy. It still can be when my parents repeat something I said to a relative calling that wanted to talk to me.
When I was talking about the annoyance of having to be attentive 24/7, that is one of the main reasons I don't go on Mixlr a lot. For some reason for me, even with amplified technology and headphones, the sound is still somewhat difficult to hear without closed caption assistance. That is why when it comes to watching videos and movies, I try to use closed captions as much as possible which is not as big of an issue nowadays because a lot more internet content is starting to use closed captions with their videos. It is a good sign but it wasn't always that way. I can remember a few years ago when the videos I watch on YouTube barely had closed captions and the movies I watch did not have that option available. Even with that available, I am still not crazy about seeing media entertainment outside of the house. The few theaters nearby that have closed captions available can still be a hassle because not all of the movies being shown would have the closed caption technology (which is usually a cup-holder with a little screen displaying the words or wearing glasses that display the words for you) and seeing musicals is not really fun for me because they usually do not have that technology available or at least where I been to.
Going back to the classroom. My educational history is messy. I attended an elementary school that was grateful enough to have a teacher available to help students with learning disabilities which my hearing impairment can be classified as. I used to have an interpreter where she did sign-language which I usually used to somewhat understand. She would tell me what is going on in the classroom. I also had an audiologist who I still see to this day that checked my hearing aids and the special education teacher who would help with homework assignments. But as I got more self-aware and my small knowledge of sign-language was waning, I didn't really need her help. My interpreter was not happy about that and it launched into a bit of an annoying dispute between the teacher, interpreter, and audiologist about how independent I could become as I got into high school. The deal was that I would still be entitled to educational assistance and be allowed to use the microphone.
The microphone was what I used from preschool to 7th grade which the teacher would wear on their shirt and it would amplify the sounds in my hearing aids. It worked great. If you want an image in your head of what it looked like, it looked like a small square box with a clip-on which you would put on your belt or the waist or your pants and connected to the box was a little tiny microphone which you would then clip onto your shirt. Why did I stop, then? It is complicated.
Usually when someone has a unique trait about them or have a disadvantage, they like to associate with people that share that trait or obstacle. I never really did and a good reason for it is I was never really raised in an environment that allowed that. The only time I really got close to students that were hearing impaired or deaf was in preschool which only lasted two years and in the special educational bell I had in elementary school and the other kids in that class with hearing impairment were people younger or older than me and I didn't have anything in common with them. So, I never had the mentality of being proud about my condition and bonding with people that shared it. If anything, I have tried to "assimilate" into the hearing world as much as I could. Ditching the microphone was a part of that because I reasoned that it won't be until long that I wouldn't be able to expect everybody around me to just wear a microphone. So far, not using it haven't been bad and I have gotten better at communicating with the teacher or classmates on if I know what been going. There were a few bumps along the road where one or two teachers correlated my questions to that I haven't been listening in class (which is just ridiculous) but that hasn't been the case lately.
So, I am kind of stuck in the deaf world and the hearing world. When you get to the bottom of it, I am a legally deaf person. But if you test my abilities, you wouldn't associate me with a typical deaf person using sign language. You would be surprised at the number of people who try to relate to my struggle. Of course, I get the number of people who notice my hearing aids and say something about their relative getting hearing aids. I mean, it is nice of them to notice but let be honest, I am sure most of you in my situation would agree with me that you find it a random comment you couldn't care less about. What even more bizarre are people trying to do sign language with me. It is not that the assumption itself is weird but how it is done. If someone is having a conversation with me and learn I don't do sign language, it is no big deal and we keep talking. Perfectly normal. But I mostly get people who ask if I know sign language, learn that I don't, and they don't communicate with me again when sign language isn't their first language. One of the weirdest encounters I ever had was a woman is about to leave the coffeeshop and she noticed I have hearing aids. She asked if I do sign language by mouthing the words and using her hands and when I say I do not, she randomly leaves the place without another word. That's it. I am used to it but man, it is just weird.
Look, I only wanted to write this post because I rarely get the opportunity to discuss my hearing impairment in so much detail. Many of my friends, both in real life and on here, are often confused about what it is like to be hearing impaired or not really aware of the awkward issues I have. So, I just hope you enjoyed reading this post and maybe learned something. Thanks.
The reason I decided to do so was for two main reasons. One, our college guidance counselor came into my class yesterday and mentioned about essays. She said that a thesis talking about obstacles or a unique condition you have can be great for an essay topic. I am not going to write up an essay about my hearing impairment right now but I figured out a post like this could be good to look at later and use for constructing the essay when I do. Two, I know when it comes to hearing conditions, we usually talk about senior folks having a hearing impairment which is great for jokes and deaf people using sign language. We certainly talk about people having hearing aids but sometimes I feel like we may not have a great image in our mind of what it is like to have one. Maybe you do, I just don't. Regardless, I am going to talk about it so you all can have a better idea of what my hearing impairment is like.
I was not born with my hearing impairment. I became hearing impaired when I went under chemotherapy to combat my liver cancer which I have mentioned to many of you about having. One of the common side effects of having chemotherapy, especially for children, is hearing loss. You can also lose your hair from chemotherapy and I lost all of my hair in my two ears which are used for people hearing high-frequency sounds. I got hearing aids not long after. My hearing aids certainly helped me but they are not remotely close to a miracle like how someone with blurry eyesight can get glasses or contact lenses which usually fix the issue.
Like someone with glasses, I have to take my hearing aids off at night because it is just a bad idea to unnecessarily leave the battery running all night. My family doesn't have the financial disposal to buy water-proof hearing aids so I also have to take them off when I get in the water or take a shower or cover my hearing aids with my hands in the rain when I forget to bring a rain jacket. When I have my hearing aids off, I am close to being deaf. My mother wakes me up in the morning for school by not just yelling at me or shaking me, she just turn on the light in the room and I wake up. I don't really talk in the morning when I don't have my hearing aids on and the music coming from the radio sound like someone tried to copy the instrumental portion of songs in a terrible attempt.
So, what is it like when I have my hearing aids on? Much better, arguably. But before I talk about the sounds of my world, I have to describe my hearing impairment. I don't have fancy charts but I do know what my parents have told me. If you looked at a chart of my hearing by frequency, it looks like a banana said, my parents. My hearing impairment with high-frequency sounds is profound, it is severe with medium frequency sounds, and it is mild with low-frequency sounds. Going along with that, let me describe how I hear the world. I can mostly hear the background such as vehicles and construction noise and the blending of the coffee machine but of course, they are loud. If you took me to a forest and say "Can't you hear the crickets?!", I would just say "No, but I can vaguely hear some birds." Another great example of an everyday high-frequency sound would be the fire alarm at the school. I hear the alarm but I can't really hear the high pitches of it and I feel no need to cover my ears.
Now, here is the messy part. Talking to people. The best analogy I would come up with would be listening to a presentation or a speech. Most of us would try to be as attentive as we can while listening to a speech and we just relax when we're not but I have to try to be attentive 24/7. Of course, that doesn't really work out and it leads to awkward but sometimes funny events when I am having a conversation. I don't do well with the low-pitched sounds such as "th", "s", the soft "f", and I get my "v" and "z" mixed up when I am listening. I am doing speech therapy to help me with that but of course, it is something you have to work at all the time. Another issue in conversations I have and I honestly don't know why it happens but I sometimes mishear a word for something different or my ears even decide to omit a word. I believe this is most likely from the difficulty of trying to be attentive 24/7. It can sometimes be annoying when I misunderstood an assignment in a classroom or even funny when I thought the friend I was talking to said something completely messed up when they didn't. When it happens, I usually ask them to repeat what they said and worst-case scenario, they just type it down on their phone and show me what they were trying to say that I couldn't understand. The one time you should never try to talk to me is through whispering. You have a 1% chance of me understanding what you're trying to whisper. Otherwise, just wait or send me a text.
Texting. For some, it is a great system of communication and for some, it is an annoying trend taking over the world and destroying the sanctity of calling. For me, it is a godsend. It is the only way I can communicate using a phone and calling is not really an option for me. Even when I put it on speaker-phone at the highest volume which I can't do in a public setting, I STILL have trouble understanding what they're trying to say. This is not really an issue but it can be when the telephone rings at home and my mother found out that my grandma was trying to call her. It did use to be awkward when I didn't have a cell phone in elementary school and the only way I could contact my parents was having the teacher using the phone to repeat what I am saying to my parents over my phone which was just cringe-worthy. It still can be when my parents repeat something I said to a relative calling that wanted to talk to me.
When I was talking about the annoyance of having to be attentive 24/7, that is one of the main reasons I don't go on Mixlr a lot. For some reason for me, even with amplified technology and headphones, the sound is still somewhat difficult to hear without closed caption assistance. That is why when it comes to watching videos and movies, I try to use closed captions as much as possible which is not as big of an issue nowadays because a lot more internet content is starting to use closed captions with their videos. It is a good sign but it wasn't always that way. I can remember a few years ago when the videos I watch on YouTube barely had closed captions and the movies I watch did not have that option available. Even with that available, I am still not crazy about seeing media entertainment outside of the house. The few theaters nearby that have closed captions available can still be a hassle because not all of the movies being shown would have the closed caption technology (which is usually a cup-holder with a little screen displaying the words or wearing glasses that display the words for you) and seeing musicals is not really fun for me because they usually do not have that technology available or at least where I been to.
Going back to the classroom. My educational history is messy. I attended an elementary school that was grateful enough to have a teacher available to help students with learning disabilities which my hearing impairment can be classified as. I used to have an interpreter where she did sign-language which I usually used to somewhat understand. She would tell me what is going on in the classroom. I also had an audiologist who I still see to this day that checked my hearing aids and the special education teacher who would help with homework assignments. But as I got more self-aware and my small knowledge of sign-language was waning, I didn't really need her help. My interpreter was not happy about that and it launched into a bit of an annoying dispute between the teacher, interpreter, and audiologist about how independent I could become as I got into high school. The deal was that I would still be entitled to educational assistance and be allowed to use the microphone.
The microphone was what I used from preschool to 7th grade which the teacher would wear on their shirt and it would amplify the sounds in my hearing aids. It worked great. If you want an image in your head of what it looked like, it looked like a small square box with a clip-on which you would put on your belt or the waist or your pants and connected to the box was a little tiny microphone which you would then clip onto your shirt. Why did I stop, then? It is complicated.
Usually when someone has a unique trait about them or have a disadvantage, they like to associate with people that share that trait or obstacle. I never really did and a good reason for it is I was never really raised in an environment that allowed that. The only time I really got close to students that were hearing impaired or deaf was in preschool which only lasted two years and in the special educational bell I had in elementary school and the other kids in that class with hearing impairment were people younger or older than me and I didn't have anything in common with them. So, I never had the mentality of being proud about my condition and bonding with people that shared it. If anything, I have tried to "assimilate" into the hearing world as much as I could. Ditching the microphone was a part of that because I reasoned that it won't be until long that I wouldn't be able to expect everybody around me to just wear a microphone. So far, not using it haven't been bad and I have gotten better at communicating with the teacher or classmates on if I know what been going. There were a few bumps along the road where one or two teachers correlated my questions to that I haven't been listening in class (which is just ridiculous) but that hasn't been the case lately.
So, I am kind of stuck in the deaf world and the hearing world. When you get to the bottom of it, I am a legally deaf person. But if you test my abilities, you wouldn't associate me with a typical deaf person using sign language. You would be surprised at the number of people who try to relate to my struggle. Of course, I get the number of people who notice my hearing aids and say something about their relative getting hearing aids. I mean, it is nice of them to notice but let be honest, I am sure most of you in my situation would agree with me that you find it a random comment you couldn't care less about. What even more bizarre are people trying to do sign language with me. It is not that the assumption itself is weird but how it is done. If someone is having a conversation with me and learn I don't do sign language, it is no big deal and we keep talking. Perfectly normal. But I mostly get people who ask if I know sign language, learn that I don't, and they don't communicate with me again when sign language isn't their first language. One of the weirdest encounters I ever had was a woman is about to leave the coffeeshop and she noticed I have hearing aids. She asked if I do sign language by mouthing the words and using her hands and when I say I do not, she randomly leaves the place without another word. That's it. I am used to it but man, it is just weird.
Look, I only wanted to write this post because I rarely get the opportunity to discuss my hearing impairment in so much detail. Many of my friends, both in real life and on here, are often confused about what it is like to be hearing impaired or not really aware of the awkward issues I have. So, I just hope you enjoyed reading this post and maybe learned something. Thanks.
My actual hearing impairment itself hasn’t changed much since 2017 but the technology has and so has my personal confidence. Since going to college, I actually got more comfortable with asking the professor to wear a microphone and to ask for closed captioning accommodations. The reality was that college classrooms are ginormous compared to high school classrooms and it is common to have professors you just don’t understand well. The closed captioning accommodation I had, provided through the university, was me giving a bluetooth microphone to the professor, connect that mic to my laptop, and set up a zoom call with a captioner that could do live captioning through a program on my computer. For the most part, it was fantastic.
I am also less nervous about taking calls and going to see movies. I no longer tell people on the daily that I am “stuck between two worlds” and just straight up call myself deaf or hearing impaired. There is nothing wrong with being legally deaf and I don’t want to sugarcoat it for people. I have newer bluetooth hearing aids that can connect to my phones to take calls and I don’t feel awkward asking for a captioning device at movie theaters. After all, I couldn’t miss the amazing experience of watching Dune: Part 2 on the big screen!
So, it is better, right? Yeah, it is. But there were some rough obstacles on the way since 2017. One of the biggest issues that I see with my disability and with other disabilities as well is that unawareness or distrust of technology is bundled together with ableism. That is often unintentional where a workplace just hasn't updated their technology in years but sometimes there are people who actively do not want to learn about new technology. The bluetooth mic for captioning that I had in college was not that complicated but I had a professor (twice, unfortunately) who refused to post anything online for the class and was passive-aggressive to me about my captioning accommodations. I actually had to report her to accessibility services when she straight up would not invite my captioner to a zoom call we had for a guest speaker. That is the biggest issue I see with ableism today is we have members of society who are refusing to embrace new technology or haven’t bothered updating it and this is problematic for plenty of disabled people who rely on electronic devices. It is not direct ableism but someone telling you they don’t want to send a Zoom link to your captioner is incredibly frustrating. That is just my example but if someone who is nearly blind doesn’t find a website accessible or a bathroom not wide enough for their wheelchair will have the same feeling.
I am also finding some societal backlash, particularly on the right, toward disabled people. It is not uncommon for me to be recommended a clip from a disabled person on Instagram and the comment section is filled with themes of eugenics like “Why do we let them breed?”. While I don’t see any politicians out there advocating for eugenics, I am always slightly worried there are people in my generation who will enable future candidates to launch attacks onto the American with Disabilities Act. I am thankful that my disability is mostly “invisible” but I wear hearing aids daily and I am not shy about asking for accommodations.
So, how does any of this relate to NationStates besides providing a community where people can be comfortable to say they’re disabled? Forums should have dyslexia-friendly fonts and be able to convert into text-to-speech, making sure that important news announcements and stories only remain as audio recordings, option for mouse-only navigation, poor color contrast for websites, and videos should have captioning. Obviously, not all of these are within our control and some of them can be easily done on the user’s end but they’re important to keep in mind. I have run into some of this in Europeia where I ask for transcripts of audio-only debates and always question the absolute necessity for a certain spectacle to be an audio show. Of course, we need to be intersectional about this because fully blind folks would appreciate radio shows much more than I would!
All non-disabled people are capable of saying and doing things that are not meant to be ableist but very well can sound like it. I won’t name any names but someone once said that people that don’t want to do a live voice debate for elections were “scaredy cats” and that text debates “suck”. That first quote was said when I was running for VP and they dismissed my concerns by saying they were transcribed and then confusingly said that could be accommodated while still having me participate even though I literally said I can’t do voice debates. Communities on NationStates will always have opportunities to understand our disabled users better and to not only make them feel more welcomed, but to improve our communities in return.
I am really optimistic that Project Keller can do much good over its course for NationStates. If you are or know someone who is disabled and want to help contribute to this, please let me know. We only improve as a community if everyone speaks up.
