Deafness and musicians

So, have I mentioned that I play the piano? Not perfectly, not by a long shot. But I've been teaching myself how to play. And I've really been enjoying it.

"But you're half Deaf? How can you play the piano??"

I'm so glad you asked. I can hear and feel it, because it's an acoustic piano. And I'm not the only person who is half or more Deaf who plays the piano. There are several who do.

Here's a young gentleman who is severely Deaf, blind, and has cerebral palsy. And he is an AMAZING pianist. He taught himself to play, and he is just fantastic. I really enjoy listening to this.

Now, why would a Deaf person want to play the piano? Well, for starters, how about the simple reason that we can? We can play, and it is actually quite enjoyable. We might not be able to experience it the same way you do, but we do enjoy it. And for me, it's to prove that I can, that my deafness doesn't limit me. I'm still capable of doing almost anything a hearing person can do. Plus, it's always fun to play in front of a hearing person and watch their jaws drop as we do what they can't think. That's always a bit of a confidence booster.

And no, I will not be posting a video of me playing the piano. At least, not yet. I need a lot more practice before I'll do that.

First Joining Deaf Culture, and Family Conflict

When I first found Deaf culture, it was a friend who introduced me to it. It was a Deaf event at a highschool, where I saw Deaf accepted as they are. I was literally in tears, watching as people told stories in ASL, sharing many experiences that were much like my own.  Because of the beauty of what I saw and for the first time, feeling like I wasn't the only one like me, I started learning ASL in the fall of 2014.

When I joined the class, we were assigned some books to read about Deaf culture, and as I read, I felt this amazing connection to the Deaf and Hard of Hearing in the stories. I was amazed. I thought I was the only one, but I'm not. And I started chasing after Deaf culture. It became an idol (something I still struggle with), and I began figuring out my Deaf identity.

All of this took place very rapidly, especially in the eyes of my parents. They watched as I changed from struggling to hear and trying to pretend I was like everyone else, to accepting the norms of Deaf culture and telling them what it was really like for me. They watched as I chased after Deaf culture and they became afraid.

I was entering a world neither of them knew. I was entering a culture with norms that hearing culture doesn't accept. I was fighting to find an identity that was reshaping who they knew me to be. I was standing up for rights, demanding equal access for the first time, and they had no idea what to do. For the first time, I let no one call me broken. For the first time, I let everyone see the Deaf side of me, instead of pretending to be hearing. And much of this change took place in a matter of a few months.

And we fought. How we fought. They thought, in some ways, Deaf meant inferior. That a Deaf person couldn't have a high ranking job. They thought that I would have nothing in common with Deaf because I had learned so much from hearing culture. And they were scared of how rapidly I was changing.

To be fair, I don't change quickly as a general rule. I think and ponder for months, slowly deciding and weighing options. I often remember things from months ago and bring them up in conversation. I don't often change quickly. But when I saw Deaf culture, I did change very quickly. And this rapid change would scare any parent, but even more so with me entering a culture they virtually nothing about.

And I was scared, too. I was afraid, entering a world about which, I knew nothing, either. But I knew that I wanted a place where I wasn't excluded from conversation, where I didn't feel ashamed of  having to say "what?" over and over again. I wanted a world where I was normal and accepted, not that token friend people wanted to have to show that they weren't biased, or to feel like a novelty in a group of people. I was tired of sitting on the outskirts of conversation, being left out, and having to stare at my plate at big family dinners because I was missing much of what was going on. So my longing to not be left out overcame my fear of the unknown. My parents did not have that same desire to overcome their fears.

So how do I balance their need for assurance that I am still me, still their daughter, and that they will always have me, while still reaching out for my place in Deaf culture, where I'm not an outcast, or a novelty people bring up in conversation?  It is not easy. With at least three grandparents in the medical field, and other family members who were connected with the medical community in the past, we all grew up, me included, with the medical perspective that Deaf means broken, or inferior. We were all generally unconnected from the Deaf community until I entered ASL classes. This was, and still very much is, entirely new, uncharted territory for us, that no one else in my family has ever fully explored like I am doing now. It's new, it's scary, and it takes courage.  And some of my family will never even try to understand. But for me, I truly want my parents to understand, because they are the two people on earth who are closest to me. And to fix all the conflict, there is no simple, easy answer. It's a tough situation, where no one but GOD has all the answers. I certainly don't. 

Deaf Community Vs. Hearing Community: Maybe they don't have to be at war

I've said before that between the Deaf community and the hearing community, I'm in two cultures. It's a very difficult position to be in at times.

You might ask, why? Why is it difficult? You have both communities. You are generally accepted in both. Why is it hard?

It's hard because, while I am generally accepted in both, the two cultures aren't always accepting of each other as a place where they think that I should spend most of my time. And the norms in one culture are not always acceptable in another. And the strange thing is, both cultures are pulling at me to be fully immersed in them, with only a little time spent in the other.

For example, most Deaf don't live with their parents like I do. They leave to establish their independence and to help affirm their Deaf identity. In a few cases, they are almost totally separated from their families, because the lines of communication have dropped. And they don't understand why I still go to a hearing church, even though I'm establishing my Deaf identity in the Deaf community.

And part of my hearing family is afraid of 'resigning' me to the Deaf community, afraid that the Deaf community will hold me back. They're afraid of the unknown. They are afraid of the cultural differences. And they want to tie me to the hearing world, afraid that they will lose me.

This leaves me in an awkward place to stand. Both communities wish me to be tied to them, almost exclusively, ignoring the opposite communities. This leads to needing much wisdom for balancing these two very different cultures. 

I love my Deaf community. I truly do. They are amazing people. They are so welcoming, so friendly, and so ready to open up the doors of communication that are often so hard for me to open on my own. I love seeing sermons in ASL from my fantastic Deaf pastor, and seeing how they apply Scripture to their lives, and growing in my different relationships with the Deaf there. And my Deaf church is becoming a second family to me. But I also love my hearing community that doesn't quite understand me, but many of whom try their best to understand me. I love the fellowship with other believers at my church (when I can hear them), and sitting under the teaching of the godly pastor of my hearing church on Sundays. And I treasure sitting under the mentorship of the godly women in my hearing church. 

And I sit here with these two cultures, one in each hand, and I see that I have been given these communities from the hand of GOD. And though they war against each other, they are not mine from man, but mine from GOD. I have been put in this position for a purpose that I can't comprehend, but that GOD will use for HIS glory. And I am not willing that I should lose either. My personal life cannot be relegated solely to one or the other. I cannot say that I will only go to a Deaf church and Deaf social events, because I love the people in my hearing church who have become so precious to me. But neither can I ignore the fact that my Deaf community has so much to offer, and that it has become a community that is also very precious to me. It is a place where all my oddities that come from being Deaf, all my differences, are accepted and even reflected back to me by the other Deaf. It is a place with open access to me, where I'm not excluded, but am accepted with open arms (sometimes, quite literally).  It is where I share so many experiences with other Deaf, and am encouraged by them.

But how do I tell both sides that I can't let go of either of them? Some understand, but others cannot comprehend this delicate balancing act. And switching between the cultural norms is really, truly hard. Some things that are not appropriate in hearing culture are fully accepted in Deaf culture, but in Deaf culture there are things that are that are not appropriate that are commonplace in hearing culture. And as I enjoy the precious treasures of both cultures, I also feel the strain of having to change my behavior to fit the norms of both cultures. Sometimes I don't succeed at fitting into the culture that I'm in and it can turn out quite badly.

In the end, it is truly a struggle, but the cost is worth having so many precious people in my life. And sometimes it hurts when these people don't understand each other, and there is conflict with how they want me to view the other culture. But I gladly pay the price, because this is where I have been placed, and this is where I need to be. But I will always need prayer to walk this line, because it is far from easy. 

Deafer than I am

Ok, confession time; I'm not always as deaf as I seem to be with people I've just met. Yes, I do pretend to be more deaf than I am sometimes, especially with strangers. There are also other people who do the same thing, too when they're hard of hearing. It's actually really hard not to do it.

So what do I mean by pretending to be more Deaf than I am? Well, here's an example; I'm in the store and a worker walks up to me and says something that really sounds far away or quiet enough that I'm almost not hearing it. Now, most people respond normally, but for me, I automatically ask them to repeat themselves, explaining that I'm half Deaf. I did hear them, and I also understood them. However, I'm not trying to deceive them about what I can or cannot hear. I'm not trying to be dishonest, but am actually doing this for a very good reason.

Why do I sometimes pretend to be deafer than I am? Short answer: so other people don't get mad at me. It sounds counterintuitive, but it actually is a very good way to manage other people's understanding of how much I can hear. You see, most people who aren't around Deaf or Hard of Hearing typically see deafness as a black and white issue. You are either hearing or you are deaf. No gray area for them. And that actually is about as far from the truth as you can get. Deafness can manifest itself in so many ways that you have to approach each individual as having their own type of deafness. They might not hear low sounds, they might not hear high sounds, they might not hear speech but the rest of their hearing is fine, they might have tinnitus which drowns out sound, they might have one perfect ear and one bad ear, etc. There is no single type of deafness. And most people don't get this.

Not only that, deafness is a hidden difference. We don't walk around with big signs that say, "Hi, I'm Deaf (or Hard of Hearing). If I don't respond, I'm not hearing you." Instead, if we miss something, it just comes off as rude, because people think we're ignoring them on purpose, which is generally not the case at all.

And here is where pretending to be deafer than I am comes in. When I ask people to repeat themselves when they are almost out of my hearing range, or are just within my hearing range, I'm helping them understand from the start that that area of their speech might not always be something I can hear. I'm setting up for them the expectation that I am not always going to hear them. So if I miss something, they don't yell at me for ignoring them, or think I'm being a jerk. I've already established a baseline with them that I do struggle to hear.

Now, is this deceptive? Well, that is a very good question. And I honestly don't know. I use it as a tool to show people that I struggle to hear, but my intention is not to deceive. There have been a few occasions where people have thought I hear nothing without my hearing aids, and they were scary enough that I didn't really feel up to the task of correcting their misassumption, and in fact, I rather capitalized on that assumption to keep from having to try to understand them in spoken conversation. However, that is very rare.

But that is the struggle of every Hard of Hearing person. We're not fully Deaf, and we're not hearing. And in order to ensure that we aren't seen as jerks, or to ensure that we don't get yelled at by someone who thinks we're ignoring someone else, we try to establish early on that we don't hear well. I've actually almost gotten in big trouble with a very big, very angry black man who happened to be up in arms about me supposedly ignoring a very lovely black lady behind me, who was practically whispering for me to please move so she could get through. I'm very lucky all he did was yell at me to move. (In case you were wondering, I had no idea she was behind me, and the moment I knew she wanted through, I happily moved out of her way.)  And that's why we manage expectations of how much we can hear. Because we've all had a situation where we missed something and it either could have turned out to be very bad for us, or did turn out to be very bad for us, and we never want that to happen again. It's a form of self-protection. 

The dreaded cochlear implant (CI) topic

We've known I've been half deaf (little 'd' for physical) for a long time now, and the time I've been deaf has been even longer than we've known about it. In the time since we've learned about it, there has been one question that people ask that has come to be quite painful. And that is the question of whether or not I have heard of cochlear implants, or CIs, or why I haven't decided to get them yet.

         

I have had this question asked of me from many people, most of whom I had only just told I was half deaf. And most people who are deaf (only physically deaf), Deaf (physically and culturally Deaf), or hard of hearing HATE this question. It's not a matter of some liking or disliking the question, it's more a matter of whether they loathe, despise, or hate the question. And here's a short list of why we hate it:

1.     In most cases when this question is asked, my health choices are none of your concern. If you are not family, or are not a very close friend, it is simply none of your business. If I decide I need a CI, that is entirely up to me, not you. I do not have to explain myself to you, nor do I need to convince you that I don't need one. You're the one trying to convince me to buy a $10,000 device that they surgically put inside my skull.

2.     By offering the idea of a surgery to "fix" our deafness, you are implying that we are not functional without it. And we most certainly are. Otherwise, we wouldn't be having this conversation, would we? It's actually quite hurtful, because it makes us feel like we're verging on being non-human.

3.     Just as I do not offer you a suggestion for you to have a major surgical procedure on a topic about which I know nothing, you should not be offering suggestions to me about life threatening procedures about which you know nothing yourself. Do you even know how much it costs (and no cheating by looking at the first reason on this list)? And do you know the risks?

4.     I've been physically deaf for my entire life. Do you think I have not heard about this procedure from my ENTs, audiologists, well-meaning-nosy friends, family, and complete strangers? If I wanted it, don't you think I'd have tried to get it?

5.     Do you realize that the procedure requires drilling one hole completely through my skull and putting wires into my ear to run an electric current into my cochlea, and then drilling another hole halfway through my skull wall to put in a processor? Seriously, do you have a death wish for me?

Image from : 9GAG.com

Two worlds, two perspectives

           It's confusing, being me. I'm stuck between two worlds, well, four really, but for here we'll deal with two of them. One is a world which hears and loves sound, and heaven help anyone who gets between a hearing person and their music. The other is the Deaf world, which has varying levels of access to sound, and enjoys the quiet of their Deaf or limited sound world. I am stuck between the two.

I was born half deaf (small "d" for physical deafness), only one ear hearing. My family is hearing and cannot imagine a life of silence. I grew up speaking and, for the most part, appearing to hear as well as everyone else. But understanding what is said has always been hard. However, there has always been the unspoken expectation that I behave like I hear, and keep my deafness secret.

Then I met Ms. J. (name concealed for privacy), an ASL interpreter. She encouraged me to learn ASL, and to interact with the Deaf community. So I took up ASL at my local community college and the Deaf world was burst upon me. I was accepted, my deafness wasn't a dirty little secret that I had to hide, it wasn't something that made me inferior. I wasn't broken, just different. My deafness was shown to be an undeniable part of me that I could treasure, instead of hiding.

And therein lies the tension. I'm not broken, but everyone thinks I am. I'm not to be pitied, but everyone does. I could just as easily pity you for living in a world more saturated with sound than a wet sponge, as you can pity me for not hearing what you hear.

The truth is, the more I accept my deafness, the more I like it. I like my cozy quiet. I like not being bombarded with sound. It's me, unaltered, unashamed.

But the fact remains, most people I know hear and don't sign. I love them and I want to connect with them, so I wear hearing aids to connect with them more easily. But I don't need hearing aids. The hearing aids don't make me more equal. They simply bridge the gap between me and you.

Yesterday, I went to the audiologist, and they told me I need to wear my hearing aids more to get used to all the background noise. But I don't want the background noise. I don't need to hear all that. She thinks I'm broken, and she needs to fix me so I can be that elusive thing they call "normal." But I'm not broken; I'm different. I'm not looking for a fix; I'm looking for a bridge between me and others, like a man from Japan coming to America with a Japanese-English dictionary in hand. He is not broken, nor is he deficient. He is simply different. My hearing aids are my dictionary for your speech, and sometimes, even then, they don't have the words you say because they do not change me to be like you; they simply bridge the gap.

But because my loved ones struggle to bridge that gap themselves, often not knowing how to do it, I wear my hearing aids to become that bridge. But it costs me.

How does it cost me? Well, monetarily, hearing aids can cost as much as a used car. They are very expensive. But more than that, I have to forego my own desire not to speak and my own wish to live in quiet, to speak with my loved ones. It takes effort, especially in crowds, to understand what is said. It is, quite literally, exhausting. And in the process, I feel like I have to deny myself, my deafness, which is an intrinsic and precious part of me, to communicate in the culture and norms of my hearing family and friends.

And this causes a great tension within me, as I walk the line between two radically different, and often directly opposing cultures. To be honest, there are days where I loathe the sounds that are all around me, longing for total silence, and yet, there are other days where I long to wrap myself in the cloak of normalcy, to be like my loved ones. Yet neither is something I can fully be, and I walk each day with that inner tension, pulling me towards two different worlds.

Open letter to hearing friends and family

Dear family and friends,

            This last Christmas, I'm sure you all noticed me and Mum signing. And some of you told me to stop signing. Some of you seemed quite frustrated with me, and what I was missing, or my odd behavior. There is something you need to know:

            I am going Deaf. In the past, I could pass off as hearing as well as you. I can no longer do that. I am completely Deaf on my left side. Nothing gets through that side. My hearing aid on that side doesn't even help that ear, but only acts as a radio to send the sound over to my right side. And now, my right side is also mildly hard of hearing.

            I am beyond tired of pretending everything is okay when I walk into a family or public event. And I will never stop signing. I am going Deaf, and when I become fully Deaf that will be my main mode of communication. It makes you uncomfortable? Put yourself in my shoes; missing over half of what you say and being left out of everything is misery. It turns every family and social event into a nightmare.

            When I sign, the world opens up to me. I can understand, I can communicate, I can connect. I am no longer cut off from the people I love. When you tell me not to sign, you place me in a cage, where the words I can't understand make the bars of that cage. Only random words are discernible from the myriad of sounds surrounding me. I can't leave without being rude, and yet you deny me the only way I have equal access to the conversation. You laugh, and I ask what happens, and you tell me that you'll tell me later, though we both know that that later will never come. You talk about plans and events, things that happened in your life, but I never know, because I can't hear you.

            And I can't take it any more. Your words fly around me, but mean nothing to me. I know I'm missing out, and it will only get worse as time goes by. I try to express myself in body language, because I'm trying to break out of the wordless sound I'm in, and you tell me to stop being so childish.

            How can I break free? You won't let me sign, you won't accept my body language that I use to express myself when words fail, and thus I am cut off from my own family and friends.

 Don't you love me enough to face a little discomfort so I can be in your world? Every day is discomfort for me. A fear of a stranger yelling at me because I don't understand; nodding and smiling when people are talking because everyone else is, though I have no idea what they're saying; seeing people laugh, and knowing I miss the punch line and missing feeling the sweet comradeship there is in laughing together; having a store clerk ask me a question, and having to stare at her with an uncomprehending smile without a clue of what she's saying. Can't you take the time for a few hours to face discomfort so I can know what is going on in your lives? When I ask mum to interpret for me so I don't have to rely on my weakest sense, can't you realize that I ask because I care what you have to say? And when I can't hear at all, can't you realize that I sign because I don't want to be alone, and not because I don't want to exclude you? That I sign because your speech is excluding me, and I don't want to be alone any more than you do?

I come to events because I love you, though it takes all my effort to understand. If it were just me, I would stay home and read a book, or blast music that is loud enough for me to hear. Honestly, every event where I have to hear is exhaustion. Can't you love me back by trying to help me instead of hindering me? All you do is complain about what I'm doing. Is it really loving of you to pretend everything is ok and to make no effort to help me, but to hinder every attempt I make at trying to hear you? If you will not help me, then what can I do?

I can no longer pretend. I am going Deaf. I struggle to hear you. If you will not help me hear you, then I will stop trying to hear you, because if it is not important enough for you to help me understand, then it is no longer important enough for me to waste my energy on it. If I cannot sign, if you will not write out difficult words that you've said, if you will not accept that my loud body language makes up for what I cannot seem to express in the sound I am slowly losing, then I will no longer try to come to your events, for there is no purpose for me to come. It is little better than seeing an old movie of you with the sound almost muted. I love you, but I cannot pretend any more that I can fully hear.

Sincerely in CHRIST,

Kiwi