I wish you knew ASL

Did you ever have something that you wanted so much that it almost hurts? And as much as you want it, you're afraid to hope for it because it will probably never happen? I do.

You all know that I'm culturally Deaf, and physically quite hard of hearing. Because of that, conversations with people are difficult and often stressful. Especially in a crowd, it makes it so difficult. And the louder the crowd gets, the more stressed out I am in conversations, until the point where I can no longer hear what the other people are saying.

Sometimes, I let myself dream of what it'd be like for someone to learn ASL just for me. Just so I don't have to struggle. Sometimes I let myself hope that maybe, one day, I could walk into church and my friends start signing with me, so I don't have to struggle to understand them. And every time I do, I get tears in my eyes, because I don't think that it will ever happen.

People think, because I can talk, that just talking with me includes me. Oh, I wish they knew how much I long to talk with them in ASL! It's so hard to use English when it's loud! People think I cope really well, but they don't know how much I have to let slide, or how much guessing I have to do to carry on a conversation. It's like trying to figure out a code in 5 seconds or less, and every time they speak, I have to figure out a new code, and then respond appropriately. I have gotten very good at the 'smile and nod' response.

 I often wonder how different my relationships would be if I could simply walk up to anyone in church and carry on a conversation. Instead, I have to pick and choose who I talk to based on who I can hear. The group of people in church who I know well is very small, because there are so few people I can hear or speak with easily, and there are very few times where I can speak to them in a quiet environment.

Recently I made the mistake of introducing myself to the Pastor's niece (whose dad is also an elder), thinking she was new to the church, and I wanted to make her feel welcome. Imagine my embarrassment when I realized who she was! And it was entirely because I had never spoken with her because she too quiet for me to hear easily.

 Honestly, I wish everyone knew ASL. But I really wish my friends and family knew it. I miss so much of their lives and of what's important to them, simply because I miss what they're saying.

If someone learned ASL for me, I think I'd cry. You have no idea how much I want that.

Milepost: Officially Having Mild Hearing Loss

I just got back from my audiologist and it's now properly official; I have mild hearing loss on my right side. That's over the space of about 7 years going from normal hearing (actually, a bit better than normal hearing) on my right side, to now having mild hearing loss. So it is confirmed again, I do seem to be slowly, but progressively, going deaf on my right side.

I'm not scared. I expected this. The truth is, losing sound doesn't scare me or grieve me. Sound is unimportant, but people...people you can't replace. And that is why not being able to hear as much sometimes makes me sad, since so many people I love don't sign. It means that relationships where I have to rely on my ears will probably be grow to be more difficult. That is what makes this hard.

It's watching my dad, who can't learn to sign because of his MS, feel like he is going to lose talking with me because one day I might not be able to hear him. It's watching my Mum's rheumatoid and osteoarthritis take its toll on her hands, and realizing that, by the time I need her to sign all the time to me, her hands might be too damaged for her to be able to sign. It's knowing that neither of my grandparents will ever have the ability to sign because of how bad their hands are. It's realizing that the majority of my precious church family, who mean so much to me, don't know ASL, and realizing that it will likely get harder and harder to talk with them, the more my hearing goes. I don't care about sound. Most sound is a nuisance to me. But the people I love...that's where it hurts.

My audiologist told me that if I want to get better help from my hearing aids, I might need to buy new ones. I only got the ones I have 4 years ago, and had the internal parts in them replaced about a year ago. Do hearing aids wear out that fast? I can't afford to buy $3,500+ hearing aids every 4 years. That's EXPENSIVE. And insurance companies only typically help once with hearing aids, and sometimes not even that. And even if they did help, hearing aids don't ever fully fix the problem; they only make things louder, not clearer. No machine can ever replicate the amazing design GOD has put into our ears.

Do I hate my deafness? No. I do like the quiet. It is very peaceful, and it is a refreshing hide away from our crazy, loud, busy world. I go about most of my day with my hearing aids out, and I like it. I do not grieve my deafness then, but I embrace it. It is peaceful. It is how GOD has made me.

But then there are the moments where I'm surrounded by my hearing church family and I can't hear them. And in the crowd of people I love, I feel so lonely because I can't hear, and then I hate my deafness. I hate that more and more I can be talking to someone and I realize I'm seeing their mouth moving, but I literally hear nothing they're saying. And I hate that it's not even scaring me any more, because it's becoming common place. And that is when deafness is so hard, and when I need the most grace from those who love me. Because that's when I am at my lowest.

GOD is Gracious to me

I was just thinking tonight how gracious GOD has been to me  as I seem to be slowly losing my hearing on my one good side. HE has been so kind to me in my deafness.

Instead of letting me go suddenly deaf, hearing nothing in an instant, HE has slowly let me grow accustomed to my hearing loss. My hearing is fading so slowly that we can only see it over the space of 6 years. What a gracious thing that is from GOD!

Think of it. What if I'd gone from being fully hearing in one ear, to being completely deaf in that ear in an instant? Can you imagine the shock? The fear? It was scary enough realizing I was losing my hearing slowly in my one hearing ear, can you imagine the terror if I suddenly had no communication with my family other than writing? Some people DO go deaf that quickly, from sickness or a sudden blow to the head. That could have been me!

Instead, GOD has been so good to me! HE's letting this happen slowly. I have time to adjust, time to get comfortable for it. I have time to prepare for increasing hearing loss. I have had time to learn ASL so that I can communicate when I can't hear what people are saying. I have had time to tell my family what is going on and to discuss plans for how to communicate with me in the future! I have had time to start making ties to the Deaf community and gain support in that community! There have been so many things I am able to do in this time GOD is giving me!

GOD is so gracious! How many people get this chance? And how many get the chance to ease into it, so that the changes are gradual and easier to get used to?  It's a blessing from GOD!

Never hearing silence

Most people think that Deafness means silence. No sound whatsoever. And that going deaf (physical deafness) means that sound gradually fades out, and that is all there is to it. Most people never talk about tinnitus.

As you know, I was born deaf on one side, and now have lost some hearing on my right side. What I expected was that the more deaf I became, the quieter my world would be. And most of the time that holds true.

However, what is most surprising in all that, is that I have never actually heard complete silence. To me, silence has been everything going quiet with a small, high pitched ringing in the background. My world has gotten quieter, but I still have sound in it, but it's not externally generated. My own ears and nerves are generating sound and it's kind of weird and a bit annoying.

Oh, and by the way, tinnitus isn't always high pitched ringing. Sometimes it is, yes. But sometimes it's a low pitched grinding noise which sounds like you have a base chord on an electric guitar being strummed while you're sitting next to a rock grinding machine. Quiet unpleasant, actually.

Oh, and just because I'm losing some hearing doesn't mean that sound doesn't hurt. Sometimes it means that sound hurts more. Sometimes, the noises that break through the silence hurt because you're not used to those sounds. OR it's because of a phenomenon called "recruitment," which is what happens when one range of sound dies out, and the remaining nerves and cillia from that range are "recruited" to another range that is still working, which makes anything in that range seem louder.

Being Deaf isn't the problem. The problem is the process of your body getting used the the quiet, or how your hearing changes unexpectedly before you go fully deaf. Like having tinnitus or recruitment in different hearing ranges.

Thankfully, I grew up with this, so it doesn't bother me too much. But now I wonder....what does silence sound like?

Fake British Accents and stereotypical boxes

So, have I ever told you that when I'm nervous in a conversation with non-signing strangers, especially when I don't have my hearing aids in, I sometimes I get a random accent? I sometimes sound like I have a fake British accent. Why do I do this? Because I am afraid that, because I can't always hear how I'm pronouncing things, I'm going to pronounce something wrong and they'll make fun of me. So to compensate for this, I OVER enunciate my words, which then sounds a bit British. I also use bigger and more elaborate words, as well.

See, this is what happens when you're half Deaf and you can't just say that you're Deaf, because people will call you a liar, and you can't call yourself hearing because you genuinely can't hear people in many circumstances. You can't be yourself fully, because people try to make you fit into this little box in their heads. "Deaf means you can't hear anything." "Hearing means you're able to hear everything." And I don't accept hard of hearing because it makes me feel like I'm trying really hard to reach the mark of hearing, but I'm failing; which is not the case.

To be honest, I'm just me. I love being half Deaf. It's a quieter world, and I like it. It's part of what makes me me. And I like being half hearing. It connects me to my hearing family, part of which, due to chronic diseases, struggles to learn sign language to communicate with me. And I like music. And I like signing. I like my times of quiet, and sometimes I just like to crank the music up and be loud.

The biggest "problem" with being half Deaf is that people try to put you in a category and then try to define you by that category. And if you stray from the norms of that category, they get mad at you and call you a liar for not fitting into their little box. What if THERE IS NO BOX FOR ME? What if, in order to understand me, you actually have to get to know me?

What if I'm like you? What if I don't want to be defined by your stereotypes any more than you want to be defined by mine? I'm a person, not a label. My life is complex. I will never be able to fit into a box. And honestly, you want to know something? Most people won't fit into a box. Most people are bigger than any box you can come up with.

5 Reasons Why I like Deaf events

I go to Deaf events fairly often. I go to an evening Deaf Bible study, I go to Deaf mall, and a Deaf event at a coffee shop. I work with other Deaf in a school program, subbing for paraeducators with the Deaf and Hard of Hearing. And that's on top of having an ASL class two nights a week, and volunteering as voice cop, sometimes. There are weeks when I use more ASL than I use English.

But Deaf events really stand out as one of the highlights of my week. And here's why:

1. Everyone signs.
They're Deaf, it's kind of a "duh" in this case. However, hearing people don't really get how important that is for someone who is Deaf, Half Deaf, or Hard of Hearing. To most hearing people, it's just another social event, but for us? It's so much more than that.

Being Deaf, Half Deaf, or Hard of Hearing, in most conversations we have, we rely heavily on trying to figure out what a person's lips are saying, combining that with whatever body language they're using, and whatever hearing we do still have. It makes your average conversation a very tense and stressful situation, because I could be nodding my head and smiling to you saying your Dad got in a car accident; which is the exact opposite reaction I should be having. Not only that, but most social events involve groups, and once you have more than two people in a conversation, the whole conversation just disappears into the crowd. 

At a Deaf event, you don't have to hear. In fact, most don't if you go to a Deaf den. Instead of relying on our hearing, or lack thereof, we rely on our vision, which in most cases, is really good. Deaf tend to have very good vision and typically better than average peripheral vision. There are, of course exceptions. But to be in a conversation where we get to use our strongest sense is such a relief.

2. They get us.

When I tell a normal hearing person about how hard it is to talk with another person in English, or about the dumb things hearing people sometimes do or say to me, they don't get it. They just don't. They don't get why it's so frustrating to have someone ask if you're really Deaf. They don't get how it feels to be continuously left out because you can't hear, or how insulting it is to be told that it's rude to sign when other people can't understand you. I tell your average hearing person, and they just ask me why I don't get a CI to fix it; which brings a whole host of problems itself. You can see my thoughts on THAT topic HERE.

But, on the flip side, if I tell a Deaf person how frustrating it is to interact with ASL students who want me to entertain them and carry the conversation, they'll get it and sympathize. If I tell them how lonely I feel at a hearing social event, or how I stood up for my right to use sign language, they'll share their own stories of their struggles. 

3. They have ideas for how to deal with situations 

Deaf or Hard of hearing all share one thing in common; we really can't hear, or at least struggle to hear. Which means that in a hearing world, where everyone is saturated in sound, we do have some struggles, mostly those involving interactions with other people. By talking with other Deaf, we can get advice on how to deal with family situations if our family is hearing, on how to deal with rights violations, and other really important topics that most hearing people are ignorant about, because they don't have to deal with it. I have the right to use ASL. I have the right to reasonable accommodation. I can get help from various organizations. And there are Deaf who can give me a better deal on things than hearing, because we share the same community. Which leads me to the next one:

4. Networking and sharing information

Deaf love networking and sharing information about how to get thing done and they're really good at it. In Deaf culture, if you withhold information, and someone else suffers because if it, their suffering is your responsibility, because you didn't tell them what could have helped them. And because of that, they are good at connecting Deaf to other Deaf who are good at certain jobs, like mechanics, or electricians, or different job positions that they know are available. They are also very good at telling you where to get good deals.

To compare hearing and Deaf culture, here's an example: in hearing culture, if someone says to you, "That's a nice shirt you have. I like it!" your typical response is to merely say "thank you," and move on. In Deaf culture, however, they will tell you where they bought it, how much it cost, and if they've since found a better place to buy it, or multiple places to buy it. 

5. We actually get to meet other Deaf

That seems like a no-brainer, but I can tell you, I almost never see other Deaf outside of a Deaf event. I can probably count on one hand the number of times I've seen other Deaf outside of a Deaf event or outside of my job which actively works with Deaf students and Deaf teachers/paraeducators. To put that in context, in the past two years of growing closer to the Deaf community, I've seen Deaf out side of a Deaf event or Deaf social setting less than five times. That's how rare that is. 

Not only that, Deaf don't carry a sign around with them that says, "Hey, I'm Deaf!" No. Even if we meet another Deaf whom we haven't met before, unless we see them using ASL, we could pass them on the street and never know that they were Deaf like us. So we don't even know all the Deaf in our area, UNLESS we meet them first at a Deaf event or in a Deaf social setting. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
And there you have it; 5 reasons why I like Deaf events. 

Good things people can do around Deaf

I had a good day a while back, when two people were fantastically patient with me! It was marvelous!

See, when I'm out in public, unless it's very quiet around me or I know the person I'm talking to, I generally don't speak very much. I typically just sign, because I'm tired of saying "what?" over and over again. After a while, you start losing the other person's interest if you say "what?" too many times. If I do speak, I tend to sign at the same time. It helps other people be more patient with me.

But I had two experiences that stood out from the myriads of other difficult conversations. The first was at Safeway. I had gone to the checkout to buy something, and the cashier said something to her coworker, but I missed it. I signed and voiced, asking her what she had said. Her response was to apologize, because she didn't know I had been lip-reading her. She then told me that she had been teasing her coworker, and then proceeded to speak clearly and directly to me, without being condescending. (You Deafies know what I'm talking about. People over-emphasizing their facial expressions to  try to "help" you understand them, and they typically end up contorting their faces into unreadable expressions.) I left a note for her manager, saying what an awesome worker he had.

Then, on the bus ride home from work there was a man sitting across from me listening to his phone. What he didn't know was that his camera light was on, so I signed to him that his light was, indeed, on. He then proceeded to sign, "thank you." I then signed to ask him what he was listening to, and he showed me on his phone. A few stops later, he moved across the aisle to sit next to me and started typing notes to me on his phone, and I did the same. And for the rest of the ride home we talked about music, jobs, deafness (he's going deaf), and other things. It was so cool! He actually made the effort to chat with me about things when I was obviously not going to be able to hear him. That never happens! (And no, he was not interested in dating me. He was WAAAAAY older than me. I just have a funny face that makes people open up more to me.)

And that, my dear readers, is how you make a Deafie's day. Hooray!I dealt with other people that day who were completely ignorant, too, but let's not focus on the negative. I met two really awesome people, and it really made my day. 

Living a double life on the Deaf and hearing fence

I wake up in the morning to the feeling of my alarm, shaking and vibrating my bed. I hear the low rumbling as I stagger from my bed to my alarm clock as I hit the snooze button. I'll probably hit it twice. I crawl back in bed in the eerie green glow from my alarm clock. Light highlights the cracks of my bedroom door. I know Mum and Dad are awake.

When I finally emerge from my room and bathroom, to our main family room, the room is bright; brighter than my almost pitch black bedroom. The constant noise of Mum and Dad's bathroom fan annoys me as I walk out of my room. It helps with their tinnitus, but it only annoys mine. My tinnitus isn't high; it sounds like someone shoved my head into a machine room where someone tossed a ton of rocks into the machines. When my ears ring I can almost feel them vibrating, like there's more sound coming from my head than there is going into my head. There is very little that can touch how low the humming is. Thankfully, I don't generally mind it. I don't even know how much I hear it, since it seems to be the backdrop of my world.

I'm greeted by my Mum and Dad with a cheerful good morning. I wander into the kitchen to use our keurig, and I listen to the sounds of the machine sputtering and spitting. The world sounds noisy to me, but apparently I'm missing quite a bit. Though, the spluttering sounds from the coffee maker and the whining, almost static of the bathroom fan don't really leave me with a desire to hear more. More noise just sounds annoying.

Throughout the day, I hear things dropped or moved. Dad talks to me. I crank my music up loud so I can enjoy it.  If I can't figure out where a sound is coming from, the cat probably knows, and if she's ok with it then it's probably nothing to worry about. Only occasionally do I have to ask Mum and Dad to repeat themselves, though this is occurring more often, and I struggle to hear anything outside of the room I'm in. But if you just met me and saw me in my home, you'd think I was normal.

But put me in a crowd or a group and everything changes. My eyes flit from face to face. I tilt my head to understand and hear better, and across my face spreads a half understanding smile. I can feel the pressure in my chest rising, as I beat down my frustration at being pushed out of a conversation by other people. Their words jumble off their lips like marbles, as I switch from looking at one face and mouth to the next. I catch a sentence here and there. Words flutter past, some clearer than others. The more people, the more I can't understand. And the further away they are, or the louder the crowd, or the more people in the group, the more they just blend into the backdrop of static and murmuring. I look away and I understand nothing. It's amazing how much my eyes play into how much I understand of what is said. And I feel alone in a crowd, often times of people I love.

But then I go to a Deaf event. I see hands flying. Facial expressions clarify the meanings of what is said. I don't have to struggle to hear what is said; I see it. If I ask for clarification, no one rolls their eyes or tells me to ask later. I have equal access to what is said, same as everyone else. And I watch as the hands of the signer across me flies in front of them, creating concepts and ideas and building pictures within the space in front of them as they tell stories, or relate their histories, or share their dreams for the future. My hands fly too, as I relate my stories, or my history, or my dreams, or whatever we are talking about at that instance. And all around me are people who understand what it's like to be left out, and willingly include me.

And I am caught in a place where I feel like I am neither Deaf, nor hearing, but am both. My day to day life I live in the hearing world with a hearing family. I am expected to act and speak in the norms of the society around me. But then, in those few precious hours when I am with the Deaf, I am free to act as Deaf. I am free to be Deaf and not play the role of being hearing. And I know then that I am Deaf. But when I leave, I am only hard of hearing, or hearing impaired, or at most, half Deaf; I'm expected to function as hearing as I possibly can. And I'm stuck in two worlds, two cultures, and it is a life that is very different from anything I ever dreamed I would have. And some days it is hard, and other days it is easier. But I never stop feeling this strain of being expected to be two things at once. 

Deaf children: Hearing world vs Deaf world

When my parents found out I was Deaf, there was a level of devastation and a level of denial that happened. In fact, I think there is still some denial, since I speak so well. My grandparents struggled with it, too, and still do. For a hearing family. a Deaf child is a tragedy. A broken child. One you struggle to connect with; a problem child.

Most hearing parents are devastated when they find out their child is Deaf. They go through the stages of grief. They try pretending nothing is wrong, and only a small number actually take steps to reach their child on the child's level, with sign language. Many, however, try to make their child "normal," by working on their speech and lip reading. And they continue grieving. A Deaf child is a tragedy in the hearing world.

But in the Deaf world, a Deaf child is a treasure. Deaf parents love both hearing and Deaf children, but their Deaf child has a special connection with them, because that child is part of the history and culture of the Deaf. It is that child's birthright. They can connect with their parents, their parents understand their struggles. They share a common bond. And when Deaf parents have a Deaf child, they celebrate. Here is a child that they can give all that they never had growing up but truly needed to help them grow and mature. Here is a child that can take a place in the heritage of the Deaf who have gone before them, and move forward with the Deaf into the future. To the Deaf, a hearing child is a dream come true.

Yes, Deaf will always love their hearing children. But there are things that hearing children go through that Deaf can't protect them from. Words are said that the Deaf parents can't hear but the children do. Things happen that the Deaf don't know about, but their hearing child does know about. And because we live in a society saturated in sound, it is harder to protect what our hearing children hear, than what our Deaf children see. Because we cannot hear what they hear, we cannot stop them from hearing what should not hear. But Deaf children our different; all that they have access to, we can access as well, and we can guard them against things that would hurt them. For us, Deaf children are treasured children, and very rare for us to have. Approximately 90% of Deaf children are born into hearing families. That means only 10% get to grow up in a Deaf home, with Deaf parents and Deaf siblings. And thus, not only are they treasured, but they are rare. 

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.

Real talks: Isolation

Did you know that being Deaf or HOH can feel really, really lonely?

I was born completely deaf (physical, not cultural) on my left side. I've never known anything different. To me, that was just life. I thought everyone had one quite ear and one loud (read that as hearing) ear. The concept of deafness was not really introduced to me.

In private school through pre-school, kindergarten, and first grade, I really struggled, and my teachers were actually going to hold me back because of how much I struggled. Friendships didn't really happen there, either, so that was also missing. My grandmother, GOD bless that wonderful woman, picked up that burden and homeschooled me. She gave me the best education I could have ever had. I don't think anyone could have given me a better education. Still, she didn't know I was deaf on one side. She and Mum suspected something was up, but had nothing to really go on.

We found out when I was 9 that I'm deaf on one side. I've told the story of how we found out HERE.

After we found out I that I'm partially deaf, Mum found a hearing gal at church who knew some sign language and asked her to teach us. Oh, so bad...that was horrible. We met once a week, with basically only vocabulary words, had only two other students besides Mum and I, we never met any Deaf, and learned nothing about Deaf culture. THAT didn't last long. We gave up on ASL after that. She was not a good teacher.

About six years ago, my hearing on my good side began to gradually decline. It took us the past six years to see this decline, and we don't yet know why I have it. (I really need to get a hold of a Neuro-otologist, but that means I have to use a phone ...*cringes*) It's a slow decline, but it's there. My upper range on my right side is now going, and if I'm anything like my mother and grandparents, this will likely be a steady decline for the rest of my life.

I started learning sign language last year, and I was hooked. However, I'm the only one in my family who signs much. Mum knows a little, but it's not the same as having someone who practices a lot.

So now I really cannot hear much in crowds, and am still gaining proficiency in ASL. I have no complete language to use in public settings where I'm not missing something. This is a really big disadvantage at church, because people don't understand what deafness is, other than the medical side of it. And sometimes, not even that. Trying to communicate at church is hard, and it's even harder when people speak quietly, or even just stop talking to you because it's too difficult for them. I tend, now, to gravitate towards louder people in church, but even then, I'm still missing out.

So, in terms of a social life, I have almost no friends, and any friends I do make tend to drift away, because it's so stressful to try to communicate. I feel so lonely, so very much. I wonder if this is how other partially Deaf people feel.  

Graduation Parties - the BANE of every Hard of Hearing person's existence

So, recently, we had a graduation party for a cousin of mine, and I attended said party. Now, I love my family, but I did not want to go. However, it's a graduation for a close family member, so I'm obliged to go to support them.

Now, a party for everyone else is a fun social time. For a HOH person, it's just another reminder of what we're missing out on. Someone talks to you, you sign and voice back, and they look at you like you've just announced that you have a highly contagious disease, or like they've discovered that you're a blithering idiot, and they walk away. That or you become the "special" family member that everyone is asking questions from; which, I suppose is ok, if it's about Deaf culture, but for a Hard of Hearing Introvert, well, misery ensues.

What makes it miserable? Well, as my pastor always says, "I'm glad you asked."

The first misery is that it's just too loud. A HOH person needs to have everything else quiet or else the words just blur into into the background, with occasional words or phrases, and if you're lucky, complete sentences, standing out from the background of incomprehensible words. Everything sounds like rocks in a grinder, or like a stone mortar and pestle being used. Even worse if there's background music, which there was in different parts of the house.

Upload.wikimedia.org,. N.p., 2015. Web. 16 June 2015.

Then, someone introduces themselves. You say hi, and sign "nice to meet you" while voicing, so that they know you're Deaf or HOH. If you're lucky they sign back, or at least continue talking with you. If not, they look at you like you've just become beneath their dignity, or at least not worth the effort of talking with, and they walk away.

Now, if you find someone who signs, it's delightful. Even if they're newer, or it's been a long time, they are generally excited to sign with you, and it can be so much fun. I got to sign with a young mother and she not only enjoyed the chat, but she explained why I was signing to her children, using it as a teaching experience. She was teaching them about Deaf/HOH and was helping them understand me. It was very cool!

However, sometimes, hearing people are really enthusiastic to meet you. VERY enthusiastic. Especially if you can speak. I think I got grilled on my deafness, knowledge of Deaf culture and ASL for at least half an hour by an older gentleman. Let me tell you, it was frustrating and yet kinda cool at the same time. Weird how those two can go hand in hand sometimes. It was cool that he wanted to know about Deaf culture, but he was so annoyingly intent on learning it that I couldn't even talk with anyone else. I felt like I was being interrogated. At one point, it wasn't just one guy, it was four or five people, and the rest of the time there were people coming in and out listening and asking questions. Oh my word, so exhausting. Especially when you're Deaf/HOH, and introverted (the definition of introverted here being that I recharge when I'm worn out by doing solo activities, generally creative things, while being social drains me like you wouldn't believe.).

Oh, and pet peeve; DON'T LOOK DOWN WHEN YOU ARE TALKING TO ME, OR WHEN I AM TALKING TO YOU! Just, don't. If it's when you're talking and I'm trying to listen, I can't lip read you, and probably can't hear you if your face has something between me and you. And if it's when I'm talking, I think you're not listening. In Deaf culture, it's EXTREMELY rude to look away when someone is talking, and continue looking away. I don't know about glancing away for half a second if  movement catches your eye, but I know that for me, I get frustrated when I don't see your eyes and mouth when I'm talking with you. Just...look me in the eye, PLEASE.

In short, if you have a HOH friend for family member, and they want to skip your party, let them. PLEASE, have mercy on them. It is not fun. 

Trouble with Hearing People on Singing

So, I'm known at my college for singing, pretty much anywhere I go. It's just what I do. I do it to relax, I do it for fun, (I do it to show off, naughty me), and I do it because of the awesome acoustics the buildings have.  It's just something that I've done for years. The staff actually seem to enjoy it and it's fun.

The trouble comes in when people don't believe me when I say I am partially Deaf. They think I'm kidding. They don't understand that I will probably be able to hear myself longer than I will be able to hear them, and as I long as I can hear my own voice echoing through my bones into my ears, I will probably be able to still sing pretty well.

Now, the actual singing is pretty easy. The trouble comes in when someone introduces me to another person, or someone approaches me, and I can't hear them. It can get a little awkward.

Here's a perfect example:
Lady: "This is Kiwi. She has an amazing voice!" {Not my words, her words.]
Gent: "Oh, wow! Cool! Wejfdj.....[I can't understand him]."
Me: "Um, could you speak up? I'm half deaf."
Gent: "hahaha...Right!"
Me: "No...I'm literally..half deaf."
Gent: "Oh...." [He looks away and awkwardly ends the conversation.}

This actually isn't too uncommon. I say I'm half deaf or I can't hear them, and they think I'm joking. For me, this generally isn't too awkward unless I can't get them to speak up. However, for hearing people, this just seems to be a major conversation stopper. It's kind of like:
"Hey, I'm Deaf! I can't hear you! Please speak up!"
"Oh...hey...Deaf. ok. Um, oh, look at the time! I gotta go."

Why does being Deaf have to end a conversation? I can still hear a lot of things, I just need you to speak up. Don't walk away. This isn't awkward unless you make it be. I guess it just gets to me. It feels like, a minute ago I was just another gal who could apparently sing, and now it's as if I'm not even worth the effort to simply raise your voice and repeat yourself. I feel snubbed.

How to get the attention of the Deaf without startling them

One of the big questions people have when they first meet a Deaf person is, how do you get their attention if they're not looking at you? With hearing people you can just clear your throat and they'll look up. But with a Deaf you could literally shout and they'll just keep doing what they were doing. They can't hear you, so how do you get their attention?

Well, what you don't do is you don't toss something at the back of their head to get their attention. No. Definitely don't do that. And don't run and suddenly grab them, because you might scare them, and you might get a very bad reaction. If someone ran up to me and grabbed me, I would probably shriek in fear and probably try to beat them off with the nearest thing I could reach. Definitely not a good way to get their attention. 

So, how DO you get a Deaf's attention? Well, here's how: 

If you're in front of them, and they're looking down, you put your hand just into their range of vision and gently wave up and down. Not right in front of their eyes, mind you. Just just right in their peripheral vision where they can catch the motion. So, say they're reading, you put your hand to the side of their book and waggle it up and down. You don't cover what they're doing, but you're getting their attention. 

If you're behind them, you gently come up and tap their shoulder twice. Twice is important, because one tap they'll think is just a bump, and three or more times signals that there's something urgent that needs their attention now, like a fire.

If you're in a crowded room, you either wave across the room, high enough for them to see, or you ask someone near them to tap them twice and point to you. 

Basically, keep calm and don't startle them.  

Computers and those Blasted pop-up ads

Most people know the irritation of having multiple tabs open on the computer, and suddenly, something starts playing on one. Then you have to start clicking through your tabs, going, nope, not that one. Nope. Nope. Nope. OH! THERE! BYEEE!

Now, when you can't hear very well on one side, or can't hear at all one side, you don't always know it's actually the computer. This is because without having two ears that hear well, you can't pinpoint very well where the sound comes from. If it's loud enough and a constant sound, you can possibly find it by wagging your head back and forth, using how loud it is in certain directions to help you find out where it is. (Louder....louder...lou...no, no, quieter...back that way. Louder...louder...louder...THERE it is.) This can actually take a while. But what if an advertisement pops up and it's not a sound you can easily follow? Well, basically, you gotta search the house to make sure it's not the computer, and then come back to the computer and smack yourself in the head for not figuring it out sooner. 

Technology is definitely interesting when you can only hear part of it. I will freely admit that.