Bucket list

I'd like to watch a live shuttle launch. The last one is in February. I'm thinking a Florida winter sounds heavenly.

What's on your bucket list?

Fear

There's a discrepancy between what I want to do and what I do. I want to travel but I stay home. I want to be busier but I don't make an effort to be active. I want to exercise more but I hang out on the couch. And the list goes on.

I look around and it seems like the people around me - and even those younger than me - are doing so much more. They're fit. They have souvenirs from around the world. They volunteer and are active in their communities. What's separating me, I wonder, from these people?

The only thing I can come up with is fear. I used to say (okay, I still do) that I couldn't do (fill in the blank) because of the hearing aids. But that excuse flies out the window every time I meet someone who has some kind of hearing loss but has still accomplished so much. So the hearing aids are not a good excuse. The truth is that I'm afraid. I've always been a people-pleaser and I've always wanted nothing more to fit in. I worry a lot about what other people think of me and I hold my reputation dear.

When I was in third grade, I was going to a school that heavily promoted the arts. There were always plays and such to try out for. Drama and dance classes were a regular staple of our curriculum. So it wasn't unusual to me one day when our music teacher walked into our classroom. I don't remember having an interpreter at that moment, which is weird. I always had one in the classroom, so I'm not sure why she was MIA. Anyway, the music teacher was an old lady and difficult to understand. She spoke a few words and then asked the class a question. I looked around and all of my friends had their hands raised, so I raised my hand, too, even though I had no idea what was going on.

Now, I don't really remember the details. I just remember figuring out that she had asked something about who wanted to audition for something or the other and I was mortified. I knew I couldn't sing. I still wasn't sure what was expected of me. So I raised my hand and asked to go to the bathroom. I made a beeline for the nearest stall and burst into tears. My nine-year-old mind didn't know that there was a simple fix to the whole thing - if I had just asked my friends why we were raising our hands, I could have avoided the embarrassment. But as it was, I hadn't yet learned that, nor had I learned that it was okay to backtrack and say, "Never mind, I don't want to do this." So I thought that I was now stuck, that I would be forced to do something - even though I didn't know what it was! I didn't want to do the wrong thing and look like a fool in front of my classmates. I just wanted out but I didn't want to look dumb doing it.

I knew I had to get back to the classroom so I wiped my tears off the best I could and left. Right at that time, one of the Deaf Ed teachers (I was mainstreamed at a public school but there was a Deaf Education program there. I wasn't heavily involved in it, but I knew all the teachers) was herding her small class to the bathrooms and asked me what was wrong. I guess those tears didn't wipe away as easily as I thought! Somehow she helped me get everything straightened out and life was good again.

But I never forgot that panic of not knowing what was going on or what was expected of me, or the fear of looking silly when I tried to participate without knowing the "rules." And I think that same panic fuels a lot of my decisions now. I want to travel, but because my friends are poor :p, my only option is to travel alone and I worry about that. I worry about safety, first of all. But mostly I worry about not speaking the language or not hearing flight announcements or not understanding a tour guide, etc. I want to be busier, to volunteer my time with kids, but what if? What if I can't understand them? What if I make a mistake because I misheard the instructions? I want to be more active - the gym is boring, though, so I'm brainstorming other ways to get some exercise in. I was thinking of taking a dance class. I used to like that when I was a kid. But suppose I look silly because I did the wrong move because I didn't hear the instructor? Or I mess up the steps because I missed the number of beats?

When I break down all the reasons why I don't do things, they're exhausting. Fear wears me out - and wears me down. My hearing aids don't make me less of a person, but fear does. And I don't want to live like that. I don't really want to spend the rest of my life on the couch because I'm afraid of what is out there. What if I don't travel? Or volunteer or dance? I would regret that more. I don't think anyone would think any less of me for trying.

People are funny

I rarely wear my hair up. It gives me a headache and I don't like my hearing aids being so prominent. People treat me differently when they see the hearing aids, y'know.

But it was so. hot. on Saturday. I'm talking dripping sweat, Amazon rain forest kind of hot (of course, this is coming from the girl who thinks 85 degrees is too much). I had a party to go to, which meant venturing outside into the Amazon rain forest that is Kansas City and I was not about to do it with hair plastered to my neck, so up it went.

Which was all fine and good until I got to QT. I ran in to get some chips and a drink and went to the counter to pay for them. The clerk, who had been speaking in a normal voice to every other customer up until now, takes one look at me (and by "me," I mean he saw my hearing aids) and it was like he suddenly lost his voice! I had to strain to hear him, because even lipreading can't cover everything.

Clerk: (whispering) "All for you?"

Me: "Huh? What?"

Clerk (no longer whispering but still speaking softly): "Is that all?"

Me (speaking as clearly as I can without sounding like I am talking to a slow person): "Yes. That. Is. All."

Clerk (who is back to whispering): "Ebit or edit?" (what? That's what it sounded like)

Me (mentally rolling my eyes): "I'm sorry?"

Clerk (barely above a whisper): "Debit or credit?"

Me (How does he think this is helpful?): "Debit."

Clerk (with raised eyebrows and some random hand motions): "Do you want a bag?"

Me (I give up): "No, thanks!"

End scene.

Usually when people figure out I have a hearing problem, they try to talk louder. And/or they over-enunciate and they TAAAAWWWLLLKKK..... LIII-IIIIKE.... THEEEEEEEEES. But not this guy, no. "I better not talk so loud," he's probably thinking. "She has a hearing problem." Um, okay.

Then I finally made my way to the aforementioned party. There were a lot of people there from church, many whom I recognized but only one or two I had actually talked to before. So I was a little worried about it being awkward and loud and left-out-y, but it was, to my pleasant surprise, not as bad as I thought it would be. And I discovered that as much time as I spend trying to convince myself and others than I'm not so different from them that maybe I could invest a little more energy in considering how they're not so different from me.

Like the guy who had to ask his friend to repeat his question a few times. "I can't hear you," he hollered. "All this ambient noise!" Welcome to my world, I wanted to say with a hearty nod of agreement. Then there was the guy who obviously didn't understand what I had asked him. The question was, "How long have you been going to Church Name?" His response? "Oh, that's nice." HA. I'm on to you, hearing people. You fake it just as much as I do! ;-)

Finally, I think people are always kind of surprised when I open my mouth. Like, "Whoa, she can like, talk and stuff?" I was at this other party last week (I know, I'm popular. Don't hate. I'm not really popular.) and I asked someone a question. I spoke as clearly as I can - and I think I have pretty clear speech. Don't correct me if I'm wrong. Just go with it. Anyway, I had to ask him three times before he heard the question, which is fine, but each time I said it, he just looked kind of... stunned. Like he wasn't sure what to do with the fact that the Hearing Aids... spoke! (insert ghostly whispers from Lost here)

I wish I was braver and wore my hair up more, or followed other people's lead and wore tricked out hearing aids (colored molds, stickers on the aid, what have you). I'm chicken because I never know how people will respond. And I don't know, I like blending in, too. Which sounds weird to say in a world where every single person is unique, just like everyone else, and everyone is special and wonderful and deserves a gold star for waking up in the morning. But it's true. I don't like standing out. I don't like being different. On the other hand, I have to admire the gutso of people who realize they can't quite blend in. So they wear colored ear molds or gather their hair up high to expose their hearing aids. And when people are funny, these bold individuals take the opportunity - even if it's just a few seconds - to educate someone about hearing loss.

Maybe it's time for me to woman up and not be afraid to wear my hair up. I don't think the summer is going to let me win this one, anyway.
:-)

Real life conversations

This went down between me and one of my co-workers, M.

Me: Ugh, I have a bug bite on my leg. It itches like crazy and now my skirt is rubbing against it just so.

M: Put a band-aid on it.

(pause of confusion)

Me: "BACON?!"

M: hahahahahhahahahaha BAND-AID

Eh. Never a dull moment in the hearing aids! ;-)

Why I am not Deaf, Part 2

(Click here for part 1)

I've been writing and rewriting this post for over a week now. I've been worried about coming across as offensive. It's so hard to tell tone over the interweb, y'know. I have friends and acquaintances who consider themselves culturally Deaf and I'm not interested in alienating them. So I think maybe I should clarify something real quick. There's Deaf and then there's Deaf. On one hand, you have those who are totally immersed in Deaf culture, who hold ASL most precious and are very protective of their culture. On the other hand, you have those who might say they are culturally Deaf, but they use a variety of communication methods - signing, talking, writing, etc. They use a combination of ASL and English. They're proud to be part of the Deaf culture but don't hold to it quite so rigidly.

As in any culture or group, there will be some who are more extreme than others. Most of the people I know who are Deaf tend to not be so extreme, but I have known my share of hard-core Deaf enthusiasts. Those are the people I am usually referring to when I talk about Deaf culture and I am speaking in GENERAL terms only.

Thanks for letting me get that off my chest. Back to our regularly scheduled programming. Like I said, one of the biggest reasons I don't consider myself Deaf is that I'm more of an English junkie than an ASL aficionado. The other reason has to do with perception.

The Deaf community isn't fond of words like hard of hearing, hearing loss or hearing-impaired because each denotes a sense of loss, of something lacking. To the Deaf, these words imply that there is something wrong or broken and Deaf people simply don't see themselves this way. They use the word "Deaf" because to them, it conveys wholeness and acceptance.

I don't quite share the same mindset about what it means to be deaf. I appreciate where the Deaf community is coming from and in some ways, I'm even a little jealous that they've found such contentment in their deafness. They've fully embraced it as a part of them, as who they are - I have not and I live with that tension daily.

But the reason I have not embraced it as such is probably more theological than cultural. I believe this world was a perfect one before the fall, before sin entered the world. There was no disease, no famine, no blindness or deafness or lameness or AIDS or cancer. I bet Adam and Eve were hott. Everything was flawless. But then sin came and brought death and destruction. Hott Adam and Eve suddenly felt the need to cover themselves up. Cain killed Abel. Cancer ravaged bodies. AIDS spread like wildfire. Hearing and sight were extinguished. Wheelchairs and crutches replaced legs. This is not normal. This is what I think of when I read Romans 8:22 - "For we know that the whole creation has been groaning together in the pains of childbirth until now."

So because I live in a fallen world, I regard my hearing loss as such - a loss. And yes, I do regard it as a disability, because I do not function the way the majority of the world is able to function. I need special accommodations and hearing loss does in fact disable me to do some things, or at the very least, changes certain experiences for me. I don't base who I am on my hearing aids - they cannot complete me, and I don't see eye to eye with the Deaf community in that respect.

If you were to talk to a Deaf person about English, or hearing people or even about being hard of hearing, most likely they'll play the race card. The Deaf vs. hearing argument isn't so different than the black vs. white issue. It's a handy comparison, and I've been known to use it myself (ex. Think about how someone who was of mixed race might be - in extreme cases - stigmatized or rejected by one race). Deaf people see themselves as being oppressed the same way that blacks have been oppressed in America. However, I think they take it a little too far. As (e put it on her blog so well:

"However, being deaf and being black are two different things. I do not think it is appropriate to use this analogy. Black people experienced and still experience oppression, at least in America, in completely different ways than how certain deaf people are oppressed. In the past, black people dealt with Jim Crow laws, bombings, lynchings, slavery, blatant discrimination, etc.

It seems to some people that deaf people are largely oppressed because the general population and the medical profession view deafness as a medical problem that needs to be fixed. They usually mean well by trying to help make deaf people more like hearing people (in helping them hear or gain more auditory and speaking skills)."

The biggest issue in question, as (e discusses briefly, is those who consider themselves culturally Deaf see themselves as just that - a culture, a minority. But people who aren't familiar with the culture tend to see deafness as a medical thing to be fixed. That's what it really all boils down to - culture vs. medicine. And so there's a lot of tension between Deaf and hearing - tension that I just am not sure is warranted. I think most oppression that Deaf people say they experience is rooted more in a lack of understanding. Hearing people just don't understand what it means to be Deaf and don't always know what to do when they encounter a Deaf person, that's all. It seems to me that Deaf people respond to this with hostility rather than patience and a willingness to educate (and be educated by) hearing people (Again, I'm speaking in general terms only. Not every single Deaf person is like this). In other words, can't we all just get along?

So to recap, I don't consider myself culturally Deaf and prefer to be called hard of hearing because:

1) English is my first language. I appreciate ASL and know how to use it, but it's not native to me.

2) The Deaf community finds wholeness in being Deaf, while I view my hearing loss as just that - a loss.

3) The Deaf community sets themselves apart as a culture, while I view my hearing loss as a medical issue.

So that's why I say I'm hard of hearing instead of Deaf or even deaf. I don't have a problem with my audiologist calling me deaf - after all, without my hearing aids, I can't hear a thing! But with my hearing aids in, I talk. I listen. I engage. I function more like a hearing person than a D/deaf person. Being called Deaf brings up some uncomfortable connotations for me, simply because I know that's not a place where I belong. You certainly wouldn't call me hearing, either, so that's why I prefer hard of hearing. Not Deaf. Not hearing. Just me.

Why I am not Deaf, Part 1

(Click here for part 2)

I like to wander through the blogosphere. I'll read a friend's blog, find out who they're following, read one of theirs, then read one of their follower's blogs, etc. It's a grand way to waste an afternoon. Anyway, during one of my blog wanderings, I stumbled upon The ASL Project. You should check it out - it's a great example of how culturally Deaf people view themselves and the hearing world.

I was especially intrigued by this post, Playing Hearing: A Losing Game. More intiguing was when I figured out I had gone to college with the author... small world! Anyway, I've read the post a couple times and even followed some of the links to videos that he and his wife made to educate people about Deaf culture. I've been chewing on this for a while now.

I can sympathize with some of what Richard says in his post. Playing hearing is indeed a losing game. When I am with a group of people who can hear well, I am actually less myself than if I am with a hearing person one-on-one. Because in a group, I can't keep up with the conversation. Lip-reading can only take me so far. And when my ability to communicate with others is cut off, I am cut off. Communication is the cornerstone to everything. If you don't talk, if you don't share yourself with others, how are you really living, then?

I can appreciate his perspective and struggle over trying to be part of the hearing world. And let's face it, no matter how well-intentioned hearing people are, the solutions are never enough. Adequate lighting, sitting in the front row, asking everyone to take their turn talking, to speak up and slow down... it might be good for a few minutes, but people forget. They forget to do those things and sometimes even the person who needs those things forgets to ask or grows weary of always having to ask. So after a while, we just stop asking and muddle along the best we can. We fade away into the background. I share Richard's pain in that experience.

Where we differ is where we've chosen to focus our energies. He's chosen Deaf culture and I've chosen the hearing world. There are probably a lot of blogs and websites and books and resources out there about the differences between the two, and indeed, my own reasons for choosing to opt out of the Deaf cultural are numerous, but it really boils down to one thing: language.

People who consider themselves culturally Deaf use American Sign Language (ASL) as their mode of communication. ASL is not merely gestured English, but a completely different language with its own grammar, vocabulary and syntax. In fact, many states recognize ASL as a foreign language.

Language is the cornerstone of culture. I mean, think about it. If Americans primarily spoke German instead of English, what a difference that would make for our culture. Or if Italians spoke Russian and Russians spoke French. Culture, customs, idioms, art, music - everything would be radically different. So ASL is the cornerstone of the Deaf culture and one must really embrace ASL to be considered part of the culture.

I've mentioned before that I used to be involved in deaf ministry. I ended up leaving for a variety of reasons but the truth is that I find it difficult to communicate with Deaf people, too. I really was doing my best to pick up ASL so that I could communicate with my new friends better. And while they appreciated my efforts, they didn't take any steps to level the playing field by working on their English to better communicate with me. I felt like I was expected to conform to them; there didn't seem to be a way for us all share the burden of communication together.

ASL is beautiful indeed, but I think English is, too. I think there are intricacies that English can capture that ASL cannot. Or at least, there are things I can say in English that I can't quite convey with ASL (and that may have more to do with my ASL deficiencies, not ASL itself). English is a rich and complex and lovely language. So is ASL, but English is my first (linguistic) love. And since English is the cornerstone of the hearing community, that will most likely always be where I'm most closely affiliated. I won't ever be hearing, mind you, but I am even less capable of being Deaf. I can appreciate ASL but I don't love it like they do. It's not as sacred to me, as Richard says. (Fun fact, though: When I'm alone, I will crank the music up and sign songs. Sorry, Mom, but I'm not doing it at church. ;))

So language is one of the big reasons that I don't consider myself culturally Deaf. It's probably the least emotional reason, really. They require I love ASL. I respect it but don't cherish it as they do. We kindly go on our separate ways. No harm done.

Stay tuned for Part 2!

Small comforts

There is something blissfully comforting about curling up on the couch with a cold glass of chocolate milk, turning the TV on and flipping it to Friends, knowing that whatever episode it is, I can probably recite line for line.

It's the little things, really.