002: My Hard of Hearing Journey

 
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As someone that is Hard of Hearing, I go over my journey of being “mainstreamed” in Hearing schools, how being differently-abled relates to social anxiety, and the beautiful new culture I look forward to learning more about.

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TRANSCRIPT

00:00 - Hello everyone and welcome to Episode 2. If you haven’t checked out the first episode, feel free to skip back and check that one out. It’s a quick little 5 minute intro in what’s going on but otherwise we’re going to go straight ahead and jump straight into this one.


00:15 - Basically we’re just going to go over my journey of being Hard of Hearing, how I was mainstreamed in Hearing schools, how being differently abled relates to social anxiety, and touch on a few other things. But to make sense of that journey, it’s actually better if I start at present day and work backwards.


00:35 - I am Hard of Hearing, which I may refer to as H-O-H. Medically it’s “moderate hearing loss”. No, not “Hearing Impaired”, I personally find that word offensive but mileage may vary within the d/Deaf and Hard of Hearing community, so it’s more of a personally choice but I personally don’t like the term. Hard of Hearing is what I prefer, but that’s a topic for another day. ATFAD is my abbreviation for “another topic for another day”. I have been wearing in-ear hearing aids for most of the time now, for about 3 years I think just about. I hadn’t started wearing them until about 2015. And I may call the Hearing aids HAs for short.


01:23 - To get an idea of the level of hearing I have, I’ll tell you what’s considered medically “normal”, quote unquote - it has 2 key parts. The first is the intensity of sound, which is measured in decibels (dB). A whisper is 25 decibels, regular conversation is about 60 decibels, a rock concert is 120, just about. If you can hear anything at 25 decibels or quieter, it’s normal, you’re good. My version of normal, without hearing aids, is hearing at 55-60 decibels, so basically normal conversation sounds like a whisper to me and whispers don’t even register. So, you could be talking a whole lot of junk about me, as long as you whisper, I would have no idea.


02:06 - Second is the tone of sound, which is measured in Hertz. Low bass tones are about 50 [Hertz]. Shrill shreeks, probably like Sindel from Mortal Kombat, shoutout to my gamers, are 10,000 Hertz. If you can hear anything from 250 to 8,000 Hertz, you’re normal, you’re good. My problem is I can’t hear many things unless it’s 4,000 or higher, so I’m missing out on the majority of that range. Things with low frequency, I have a lot of trouble hearing, so guys with deep voices, engines, if you have the A/C running, anything of that low hum sound, it’s gone to me. The problem is human speech is about 500 to 3,000, and again, I can only hear 4,000 and up so human speech is gone. This type of loss is called “reverse slope” and it’s a bit more rare than the usual “i’m getting old” kind of loss. There isn’t as much known about it compared to regular loss but audiologists are doing their thing, trying to advance the field so I’m pretty hopeful for that. Most hearing aids and the technology to assist with auditory issues aren’t built for this reverse type of loss. Once I had an official name for it, it was definitely a mix of relief, knowing I could research it, I could learn about it, I could find other people with it. But it was also a bit of disappointment because statistically half the people go deaf and half of them don’t - it’s not degenerative in their cases so at this point it’s a bit of a crap shoot. We’ll see.


03:47 - I had my first adult hearing test in the summer of 2015. Still don’t know why the hearing tests in schools never caught it. Maybe they’re not that advanced, maybe I tried to lie my way through it, who knows. That appointment helped me get medical proof, so to speak, of my hearing loss - which was a huge deal for me. I just always assumed I was just stupid. Straight up, I just thought I was dumb. That I didn’t understand what people were saying. I thought that maybe my brain couldn’t understand the joke - that it was too clever. Even though I’ve always done pretty well, or slightly above average academically, I wasn’t getting stuff. I thought “well, clearly it’s me because there can’t be something wrong with everyone else so there must be something wrong with me.” It was good to have a name for this. After the appointment, I told a friend about it. I remember they asked if I was sad or if I wanted to cry because they would cry if they were in my position. I was genuinely confused - you know like when dogs do that head tilt. I felt like I was internally doing a head tilt. I couldn’t understand why they were sad or be sad. I still had some hearing and it’s not like I lost anything since poor hearing was all I’ve ever known. I can't compare it to the good old days of where I could hear the spies whispering in the corner. It wasn’t like I suddenly lost a limb and now would miss having two. If anything, I felt a bit of the opposite - I was now gaining more of an ability.


05:29 - Fast forward a bit, I got my first pair of hearing aids. They were the little ones that rest behind your ear, and there’s a little wire that curls around your ear that connects to the in-ear piece. Honestly, I didn’t care about aesthetics. There’s a bunch of different type of hearing aids but I didn’t care. I’ve grown up wearing glasses, I’ve gone through Invisalign treatment, and I’m generally not a person that is big on physical appearance and caring what other people think about me. And like a true designer slash math geek, I was very much so function over form. Will they work for my type of loss? If they look cute, dope, but I need to make sure that they work. The first few weeks were spent back and forth to the audiologist fine tuning them, reprogramming them for what works best for me. So during the day, I would make notes of sounds that were too loud, how they were in certain environments, if anything seemed muted, that kind of thing. They would get reprogrammed and then I would head back out into the real world and see if the adjustments helped.


06:34 - After a few appointments and finding an Audiologist I felt comfortable with, I got a new type of HAs - the tiny in-ear ones, you can almost barely notice them -  and I enrolled in American Sign Language classes - ASL. Part of that was preventative measure in case I go deaf, I can still communicate with the Hearing world. And partly, honestly, just because I love learning about other cultures - usually through travel, learning a new language, or building a diverse circle of friends to be constantly exposed to cultural learning opportunities. One of the best things about the ASL classes was how much they integrated d/Deaf culture. It wasn’t just here’s the signs, here’s the grammar, straightforward. It was also things about the culture. A bit of a tip here for anyone that may not interact with differently abled communities in terms of hearing: there is deaf, with a lowercase D, which implies your physical ability. And then there’s Deaf, with a capital D, which refers to a person’s self-identification with that community - so it’s more of a cultural thing versus a physical thing. Through the classes I got to interact with a range of people on the spectrum: people that were Deaf, people that had Cochlear Implants but didn’t use them, people that had Cochlear Implants but did [use them], Hard of Hearing, and Hearing. We touched on everything: Deaf social etiquette, historical moments in Deaf culture, and modern cultural norms… even the medical language used by doctors when telling Hearing parents their newborn is deaf and how that affects the parents’ of their child being deaf. Lack of accessibility for Deaf people globally. A lot of these topics were way deeper than class time allowed but that was the window for me to do that independent research. I started looking into those kinds of topics, attending events my ASL school, joining other ASL online groups, and genuinely trying to engage with the community. In the classes, I felt more comfortable than I expected. I didn’t feel like the teachers judged me for being bad at it or that I was judged for being “half-hearing” and having privilege of operating in the Hearing world. I can’t judge the deaf community purely on that educational setting but if that’s an indication of their overall perspective and level of acceptance of others, dope.

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09:20 - Classes were fun but there was still a gap. Throughout this journey, I realized I have always felt in between the worlds but I didn’t realize it until now. Many of the people that were d/Deaf had grown up in a d/Deaf or HOH community so they had a sense of pride in their identity and/or a connection to those that were of similar abilities to them. I grew up in the Hearing world so I never felt like I really quite fit in. I was “mainstreamed” for my education, meaning I attended all Hearing schools, I was never taught ASL prior, I didn’t engage with anyone who was differently abled in the auditory sense, and was even in band and orchestra. I felt stupid in the Hearing world and but then through ASL I began to feel inadequate in the d/Deaf world. I didn’t hear well enough to feel comfortable in the Hearing world. I was always asking “huh” or  “what?” or answering “yes or no” to a question that was not a yes or no question. Even now, I’m not fluent enough in ASL to feel comfortable in the Deaf community. It’s a very strange in-between. But as a person of color, woman, multi-racial, and LGBTQIA, tattoos and piercings, intersectionality is a big part of my life and this just a new layer to navigate.

10:51 - And even though I haven’t found a “home”, so to speak, in either setting, I began to wonder about my privilege of being hearing-passing because I’m verbal. That’s how I learned and how I grew up. People that are non-verbal have a much harder struggle because society is structured for the Hearing. It’s somewhat similar to the argument of “passing” in the LGBTQIA community. Sometimes a gay or lesbian person will comment that a bisexual person has the privilege of passing as heterosexual. That is ATFAD, for sure.

11:46 - Faking comprehension became a part of interacting with people and but, some days, it was exhausting. I’m going to be real - it was exhausting. Constantly being aware of what  amd I missing in the conversation, if I was responding “correctly”, how do I look? Do I look like I’m stupid? Do I look like I’m processing something right now?... and that’s just in social situations. In work environments, especially corporate ones, it was worse. In meetings or conference calls, there are more people, usually the conference calls are put out through some speaker that’s a low tone that I cannot hear. It was so much dread any time we had a big conference meeting like that. It was the worst. The reason I was exhausted is not only am I putting in effort to make sure i’m appearing like a normal quote un quote human, but the sheer process of interacting with people. If you’ve ever been in a country where you didn’t speak the language, you might be able to relate. There’s a lot going on in your brain. You’re trying to figure out what they are referring to through gestures, facial expressions, body language and that’s how my brain kind of goes through the process. I’m listening at first, using what hearing I have, and pick up certain letters or pairings or words. I’m trying to lipread, guessing words I didn’t hear well or seeing which shapes looked the same and maybe it’s a repeating word, maybe it’s a common word that I know. Try to form a better concept of what’s being said. Then my brain is trying to calculate what the words could be, based off those sounds or mouth shapes. I’m applying common sense to fill in  the gaps - what would logically make sense in what’s actually being said. Okay, we were talking about coffee. Does it now make sense that this person is talking about Christmas because that’s what it looks like - I don’t know what’s happening. I’d put it all together and hope for the best that what I thought was being said was actually said. And then there’s that follow up process where I’m listening to other people’s responses to confirm I what I thought was right or if I have to revise it. Meanwhile all this is happening, I’m still trying to keep up with the conversation and engage as well in case I have an opinion or something to say. Socially and in work environments, this is the process that’s happening.

14:11 - Presentations and public speaking gave me the worst anxiety. After having the HAs, I began to wonder if that anxiety, or being differently abled, had created or contributed to my social anxiety and to shaping my self-esteem. Because constantly thinking you’re stupid but not having a reason why factors into a lot of things. To this day, there’s an incident that happened in university I think about. I was giving a presentation in philosophy and the professor asked me a question. I think I might’ve said “huh” or “what” three times, meanwhile I feel like I’m looking stupid by continually asking. If you’ve ever been driving in the car and you’re lost, you turn the radio down as if that’s going to help you. Well, when I get socially anxious I feel like my hearing decreases even more. So I’m already freaking out, I already asked “huh” or “what” 3 times, so I just freaked out internally and said “I’m sorry, I didn’t come across that in my research”. After class I asked the professor one-on-one ”Hey, what did you say? I really want to look into it and research it” - that was my excuse for asking again. I actually heard the question this time and in that moment I felt so incredibly stupid because it was something I had lots of information on. Had I heard it, I could’ve been like, boom, boom, boom, x, y, z, this is what I know. In that moment I started thinking “great, my classmates think I’m stupid, my teacher thinks I’m stupid or I’m lazy. And my brain spins out of control in that moment. Maybe the professor thinks I didn’t do my due diligence. “Is this going to affect my grade?” Being HoH wasn’t something I actively thought about until university when it started to become more obvious of how bad it was. I was barely hearing lectures, even if I sat up front, I was messing up presentations because I didn’t understand the question. Thinking about how it affected my life previous to university - the social anxiety or making me feel stupid in academic situations. That interaction between the anxiety and my ability, makes me wonder how that affected my self-esteem and how I navigate social situation. It also makes me wonder if that’s why I didn’t go for my PhD in Philosophy. I have two degrees, and one is in design and one is in philosophy. I went the design route because design is visual - you can show something and people can get it. Philosophy is verbal so it’s very strange. I know this sounds like entitled complaining, I get that, but I have a right to my feelings and it is what it is.

16:59 - There are days that I don’t like not having my HAs in - just for physical comfort and also the world isn’t so loud and it’s less exhausting to not be constantly interpreting. I like not having to put in the effort of adapting to the Hearing world - which I find is a common theme: Deaf or HoH people going out of their way to accommodate the Hearing, or just to exist in the Hearing world, instead of the other way around.

17:34 - But anyways, to wrap this up, all of that is a roundabout way to bring it back to present day. I’m still taking ASL classes, I follow Instagram accounts of Deaf and HoH travelers, following Twitter accounts of advocates for all different types of disabilities, especially invisible disabilities. I hope to collaborate with other HoH creators. I hope that I’m helping to make people aware of basic accessibility - simple things like having captions on their video content. Honestly, for me, when an Instagram person that I follow for business advice, they have captions on their videos, I’m like whoa… and you don’t need anything fancy. Even if you’re just typing out a quick summary of what your 15 second Instagram story is and you have that on the screen, that’s massive for me. Helping designers realize they should be working WITH the differently abled, not FOR them - include them in the conversation before you think you’re magically solving their UI/UX problems. The disabled are the original life hackers, let's be real. They figure out ways to make it work. White saviour complex is real and we do not need another version of that in other areas of life. And that goes for me too - I’m calling myself out to make sure I’m engaging in truly supportive and informed ways. That I acknowledge the lack of resources for the d/Deaf community that they have to deal with and that I’m providing ways to improve their experience in a predominantly Hearing world. As a designer, I can contribute to that in a positive way. As a designer, I can inform myself. As a designer, I can educate myself and reach out to them and see “what would be helpful for you”? I’m still learning and accepting and navigating. It’s messy and it’s muted but it’s my journey.

19:42 - I am happy with where I am with life, with the ability that I have. This may sound disrespectful to those that are Deaf and I don’t mean any disrespect in any way, but I am very thankful that I still have some hearing. My love and appreciation for music… if I ever lost that, I would be massively affected. I don’t even know who I would be after that. Music is so core to who I am. Through music I've learned, loved, hated, lost, accepted, and lived. I've met people, through music, that are a part of who I am. That have literally shaped who I am today. Yes, I know that people with different hearing levels or deaf people have it way worse than me, with everything from health care to educational access to basic employment opportunities and so much more. I don’t want it to be a competition or slippery slope of pain comparison. I think that pain and suffering is subjective, and it’s objective, in some senses. If Person A stubbs their toe and they have a high pain tolerance, it’s not that big of a deal. Person B, it might be excruciating for them. Child A’s parents get divorced, that kid might wild out. Child B’s parents get divorced, they might be like “well, that’s life” and keep it moving. Everyone reacts differently and has different thresholds so I don’t want to compare pain and suffering, in that sense. I think you can compare the effects of it in terms of scale and type, when the source is institutional such as systemic racism or lack of accessibility…. I’m getting off topic.

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21:37 - Things that you identify with don’t have to define you. I am Hard of Hearing, among many other things. I have learned to embrace being a part of two worlds, growing through them, facing the challenges of them both and it’s been a crazy wild journey and I’m down for the rest. This episode has been a lot to unpack so feel free to reach out. If you have questions, want to share your own experience being differently-abled, if you have comments “hey I didn’t agree with what you said”, engage. I’m on Instagram and Twitter at sublationstudio. The transcript for this and some resource links will also be on sublationstudio.com/podcast. S-u-b-l-a-t-i-o-n-s-t-u-d-i-o dot com slash podcast. Thank you very, very much for taking your twenty-something minutes out of your day to listen to this. I look forward to chatting with you all, and see you on the next episode!



RESOURCES

Gallaudet University (Washington, D.C., USA)

American School for the Deaf (West Hardford, CT, USA)

Sign Language Center (various locations)

Lifeprint, Dr. Bill Vicars Lifeprint Website | Lifeprint Facebook | Bill Vicars YouTube

 
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