Wednesday, March 27, 2013

Different Lives

Someone who lost their hearing late in life once remarked of me, "She's luckier than me because she never knew what it was to hear."

Let me tell you what I think of this:

One of my earliest memories is at 2 when my dear grandfather was playing with me but I didn't understand a single word he was saying to me....except I DID get when he slowly articulated, "Tasha, you need to learn to read lips."

From that moment forward, I started studying people's lips consciously, matching my mother's signs to her lips. I never could lipread my grandpa though, the very one who set the wheels in motion for me learning a very valuable skill.

A valuable skill indeed, but one that will always be tested by curious people asking, "Can you lipread?" and then upon saying yes, they throw some random phrase at you like, "The orange cow likes to eat fries." Then when you fail to understand, assume you CAN'T really lipread, forcing you to go into the millionth explanation of how lipreading REALLY works. (A lot of context, knowing the person's way of speaking, and so forth.)

Or how about the sweet sadness in sitting around the Thanksgiving table, as your mother's plate sits full of food, because for her to eat would mean she stops interpreting everything and you stop understanding what people are talking about. So when she does take a break to eat, she apologizes to you, or she finishes her now-cold plate after everyone else has finished.

Growing up knowing that, unless you are with Deaf or fluent signers, you will drown in a sea of words when you are with more than 2 people at once. You will drown, with a smile on your face, laughing when others laugh, despite not knowing the punch line....or even what the joke was.

This "faking" is extended to others too. You understand you are not an inconvenience but you feel this way, when you sign something to your father and he nods with the all-familiar expression on his face: "I love you but I have no clue what you just said so I'm going to nod." To this day, the best conversations my father and I have had have been over texts or emails. Hearts poured out in words, almost-but-not-quite transcending the communication gap that exists in person.

Try this on for size- not knowing if you had a genetic mutation that would slowly render your precious sight to nothing- until the age of 19, when you decided to march down to the hospital and demand genetic testing. Genetic testing that, at first, was deemed "unnecessary." Is it not necessary to know if the sense that holds you solidly to others will one day disappear?

I still remember the nights I would cuddle with my mother in bed and we would take turns writing giant letters forming words on each other's backs and use tactile sign language. Her pretense? It was a game. The reality? She feared me being unprepared for the blindness doctors had warned was imminent.

Still to this day, at times, I get strange looks from people when I hand over my phone for them to read because I cannot speak for myself well enough yet. Most of the time, people realize that I am a capable person who just communicates differently. Other times though, people stick to their assumption that "Deaf people don't know English well" or "If someone doesn't speak, that suggests something about their intelligence."

Despite all that though, I STILL would not presume that my life was harder than this person's or anyone else's, for that matter. True, I do not know the sadness of losing something "you never had to begin with," but I also do not know the sadness of growing up in a family where nobody knows any sign. Or the sadness of having cancer, or any of many other conditions humans face.

There are many things I do not know, just this one: We can never compare our lives to any other person's.

All we can do is remember what Plato said, "Be kind, for everyone is fighting a hard battle."


Wednesday, May 16, 2012

An Update?

 It's been way too long since I wrote & could I go back and change that, I would!

I know all of you are wondering: So how is she doing?

To be totally honest, I'll say that the cochlear implant isn't all that I had hoped for- that is, a perfect "fix." Some days I wonder if it would be easier if I didn't know there were people talking, or hear that trite announcement on a store's PA, or know that my roommates are chatting just outside my door.... because I come so close yet so tantalizingly far from being fully present in that world.

It is partly this: I do not practice enough and I acknowledge that freely. With even just a little practice though, I see improvement, but it has to be a constant in your life. Every little bit helps.

It is also very much this: I got the cochlear implant relatively "old"-- I do not doubt that if I had gotten it younger, I'd be in a different position than I am today.

Nevertheless- despite the fact I do not always get what people are saying, and distant speakers---well, forget that- not because I can't hear, but because I don't understand.-- the cochlear implant remains one of the best things I've done in my life. (Potentially THE single best thing.)

Monday, October 26, 2009

Juxtaposition of Teaching Sign


I often teach sign & seek out opportunities to do so. I just got back from teaching a fun group of RAs (resident assistants) sign at one of the UW dorms.

As always, I provided some quick background information & an explanation of the difference between ASL, English, and PSE (pidgeon) sign as to clue the learners in on that while *I* personally may sign "How are you?", that this is not uniform for ASL. An ASL user would simply sign, "How you?"

I found myself this time, acutely conscious, of how I kept showing BOTH the ASL and English signs. Really, it is better people are educated that the way *I* sign is not the only way and most importantly: ASL is a separate language that has its own grammar structure. It is not just a way to "represent" English although that is the way I choose to use it. If they were to encounter a Deaf person, I want people to walk away knowing that the Deaf person is not "stupid" or "illiterate" when they may write in ASL or "drop" the "is" from "My name is."

They are not even dropping the "is." They are signing THEIR language properly.

Something I've mentioned before is how I tried (and still try, I'll admit) to distance myself from the Deaf culture because of the lack of understanding that Deaf people have their own culture/customs which may come across as ignorance or even apathy to those unaware of it. It is not always a conscious decision and the older I get, the more I understand how "terrible" this choice sounds.

Some Deaf would say it's not their fault, that the hearing need to become educated. But as always, the perennial question here is: How do people get educated when they're UNAWARE they need to be? Of course, the Deaf are the ones who need to educate. Sometimes, this position gets old.

Some hearing would say the Deaf need to learn English (structure), after all, the predominant language is English. But would that solve the misunderstandings that may occur when (any) two cultures interact? I don't think so.

So I try to do my small part in the world to further understanding. The thing is, though? I'll let you in on a secret.

I enjoy it. I really, truly do. I love seeing people learn to communicate in another way. I love people's minds being expanded. I love being in front of crowds. It is a privilege for me.

I'll probably keep English and ASL in a juxtaposition when I teach. I feel I can't rightfully teach JUST one. It is a bit conflicting; these two modes, yet I find people are flexible enough & understand. So, I'll show you how to sign "How are you?" but I will also show "How you?"

Tuesday, February 24, 2009

Inside my veins runs information, therein lies an explanation...


It's been WAY too long!! Sorry, but again, I certainly don't lack anything to write about. I will be putting up posts from Dec-Feb, but will also be updating... no worries, loves! I guess it's just when I think about how long it's been... really, it doesn't make sense so I won't attempt to explain.

December 17th saw me marching into the University of Washington hospital, to get a blood test I had requested. One that would, hopefully, reveal just why it is that my ears refuse to yield any noise to me, and remain blissfully unactivated... unlike my wonderful implant.

I waited.... I waited....

And waited some more.

Frustration ensured. Then I finally had the sense to just sort of forget about it.

Despite the fact I was anxiously excited.

Part of it was that I hoped, with this diagnosis, I could effectively have a REASON for my deafness. But what really prompted me initially? My fear of going blind. Yes, a somewhat irrational fear to some of you, perhaps. The more I thought about it though.... the nagging question of "What if?" haunted me.

As a child, my parents were told of the dismal possibility of their firstborn child, already deaf, perhaps one day becoming blind. At nighttime, my mother would spell out letters in my hand in the dark, under the guise of it being a fun game. It was with that sudden memory that I, biting my lip, decided I HAD to know why I was deaf.

With deafness, also usually comes a degree of visual impairment if you have one of various syndromes. It was the thought of that hidden monster, waiting to pop out from under the bridge.

Medical folks are at this point, long accepting of the fact I am deaf. They no longer ask why. I wanted that "Why."

I finally got the answer.

After repeated calls, and me INSISTING on an answer when I was told they finally had one, on the almost last day of January, just when the month was drawing to a tired close, and asking them to have the surgeon email me the answer....

I laid down on the plush worn-out couch in an old dorm of mine, and FELT almost certain in a instinctual sense, that I knew the final result already, as though it being etched in my DNA entitled my body to sort of an intrinsic knowledge.

My phone vibrated, stirring me out of my half-asleep stupor. "Jay Rubenstein" was the sender.

On Fri, 30 Jan 2009 10:33 am, jay rubinstein wrote:
the test is positive for you having a genetic hearing loss

it would be worthwhile for you to come see me at some point to discuss the implications of this in the future

the questions you may have are likely too complex to discuss by email

I quickly typed back, "which connexin gene was it?"


I found out later, through Dr. Google, that this gene is located on Chromosome 13*. This is the same gene that goes awry in Down Syndrome children, causes the characteristic whiteness in people with Waardenburg, and finally.... "nonsyndromic deafness."

And there we go.

While we are at it, I 110% recommend that you get tested for this if you are deaf and don't know why, or have deaf relatives! Even if you think they've run every test possible on you, get this test done because apparently, this was not run on me in 1989. Perhaps it was not around then.

It does have implications, which I will cover in my next post, including having deaf children, because it is GENETIC.

My reaction? To come soon! That is definitely a whole another post in itself.... But think about this. I am 19 years old. Ever since I was diagnosed at six months old, with profound deafness, nobody has had an answer. The best given us was simply "it's probably genetic."


Thursday, December 4, 2008

Advantages of Speaking: Not Audist?

Regarding the perhaps post. I want to thank everyone for their encouraging words and also to those who expressed their opinions. I'm not sure if you'll come back here to see what I have to say, since you're anonymous and may have just stopped by and been spooked away by my last post.

Let me speak to you all here: I don't try to promote one lifestyle over another. I have met so many different people who are happy the way they are, however different or similar their life is to mine.

I do acknowledge the glaringly obvious fact that some lifestyles are easier than others. If you can speak clearly, you are in the majority. But you are also in the privileged. You live easier as a result of that. And the comments I may have made about it being SO much better to be able to communicate with everyone around you- well. I don't feel it's audist. I feel it's common sense. Those people can learn both sign and English and whatever other language they want to.

I'm not saying Deaf can't learn other languages. I personally used to know Latin, Spanish, and French. But I don't speak it. I read and write those languages. What I am saying is it's easier if you can speak.

As I get older, I find it increasingly harder to find my way around in a world that is supposed to be so open to me and which I find increasingly shuts me out and not even on purpose.

I can't go to a drive-through without getting a glare because I've driven past the speaker box, and I get to the window and their faces melt into sympathy when they realize they've misjudged me.

I can't walk down a hill in the dark with a group of laughing friends and join in their conversation efficiently because lipreading is never 100% accurate or reachable.

Even if they were a group of deaf friends or friends who signed, it still does NOT CHANGE ANYTHING. It just changes who my friends are and how it may mean they're more considerate and/or patient or quicker learners of sign than most others are.

There are so many things I can't do, and I'm not content to just accept them for what they are. I'm not content to go to a culture that (while wonderful in its own ways) STILL doesn't solve my problems with 99.9% of the world. I know that if I'm not happy with something then I have to either a) accept it or b) try my hardest to change it in some way. I HAVE tried to accept it but the reality is that I can't imagine going on for 70 or more years disconnected, using paper and pen and an interpreter (not just in school) perpetually. I have to try and CHANGE my life however I can because here's a fact:

I can't change 99.9% of the world. But I can change how I respond to things. And I have. I've used my phone to talk to people more times than I can count and people are often impressed at how fast I type on the phone now. I use paper/pen. But this still doesn't integrate me into the conversations I so long to be involved in. Whipping out your phone to ask a simple, "How are you" to somebody in an elevator who will then look at you for a cue as on how to respond because of course, you aren't talking so they wonder "How do I talk to this person?", takes longer than the actual elevator ride and takes more guts to do than just verbally saying, "How are you?" with a friendly smile and having them say it back to you.

Even as a child I knew there was NO way I could fix my separateness from the world. At the young age of six, I felt the stinging damage. I believe I felt it younger. Not because I was raised in a hearing family. They signed and truly did their best to include me. Not because I was told I was "inferior." In fact, I went to a school where deaf culture was celebrated and seen to be unique. Nothing or nobody made me feel this way. It was just the sum of my experiences and continues to be. As Helen Keller, someone who overcame most amazing odds in a time that was more than willing to put away someone like her in an institute without ever educating her, said in a letter to someone,

"The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus--the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man."

In other words: "Blindness separates you from things, deafness separates you from people."

I long to be INVOLVED. I long to not have to depend on my fluent 15 year old "hearing" sister to voice for me on holidays or with people who don't know sign.

I feel I may be able to learn to speak well enough someday that I may be able to go up to my favorite burger joint and say, "I want a deluxe, with fries" without any awkward hesitance on either my or the cashier's part. And that is when I will feel like I most fit in- when I can look at that person on the elevator and say "second floor, please" without awkwardly reaching across them or showing them two fingers.

And for that, I would give almost anything. I think anyone could relate to wanting to be involved with their own world and being frustrated when you're a 19 year old who has to have people voice for her constantly and they're constantly getting it wrong and making you sound like a different person than you are. Your world isn't deaf or hearing or confined to just your closest friends. It's EVERYONE you encounter everyday.

Wednesday, November 19, 2008

Perhaps I need to just cry

Perhaps I need to just let it all out
Perhaps I need to go for a good long walk
Perhaps I need to take time for myself- more than the small snatches I don't feel belong to me, because I am always supposed to do something else.
Perhaps I need to take a break?
Perhaps I can do it, indeed, I know I can.
Perhaps I need to stop thinking some people are looking at me oddly when I can't be voiced for correctly or when I can't catch what they're saying fast enough
Perhaps I need to believe in myself more
Perhaps I need to believe in myself less? (As not to get my hopes up)
Perhaps I need some perspective-

Actually I know I do but where from? I'm one of those people who, with a moment of eyes-closed, "let it all in," can almost successfully leave my current train of thought and take an outsider view of my current situation. I know I shouldn't be so dramatic but at the same time I know others would go mad- ABSOLUTELY MAD- if they had to communicate without voice for half a day let less 19 years.

Perhaps I need to just shape up
Perhaps I shouldn't post this- it's not as eloquent and just sounds whiny.

What AM I saying here? Oooo, existential crisis?

I want to put my life on hold, step out of it, and devote a month or two to intensive studying for my implant. And to draw, write, and finally get that website up. Not just for myself but for the people I hope to help with it as well.

I want to take what they called a "sabbatical" ... what I am doing right now is NOT working.

Don't worry, I'm not as ... whatever I sound right now. I'm just walking around outside of the Hearing clinic, waiting for my appointment at 11:30.

After a morning in which I felt like things were definitely not working with the interpreters in class. Not because they don't do well- they do. But because it isn't the right option for me.

I never want to depend on sign, as far as I'm concerned. I want to meet with Thom again and speak to him- REALLY speak, instead of having to ask my wonderful, brilliant boyfriend to translate.

I want to be able to do this with everyone I meet, because most people I know don't sign or don't sign that well.

Yet, I know I'm really blessed. I have a great group of friends, both online and in person. I have the CI- I have the help I'm getting for it. I even have UW resources.

Perhaps......perhaps, what?

I'll probably go back and erase this before anyone gets to see it. But I'm posting it right now because I don't trust my phone to successfully save it without erasing it, except if I actually press the "Post" button which posts it to the web.

Tuesday, November 4, 2008

Election Day 2008!

A historical moment has been upon us for this past year and even longer before that, before I even knew who McCain or Obama was.

And finally, it is here. Election Day!!

So. Let's look at some of the important issues and interesting considerations the next president of America will take on his plate:

140,000 American troops are in Iraq.

10- More than 10% (to be exact, 15%) of Americans are uninsured medically
90 guns per 100 people in the U.S- the most armed country in the world (Reuters news)
8.5 million barrels of oil produced per day in U.S (we use 20.7 million a day)
70% of 8th graders can't read at grade level
6 wars going on around the world currently (Yes, I'm surprised it's "only" six too)
550,000-650,000 illegal immigrants in New York alone, not counting other states
485,000,000,000 federal budget deficit
3 million pregnancies a year are unintended- out of those, 1.3 million pregnancies are ended
2 states out of 50 that allow same-sex marriage (California & Massachusetts)
1 nation (as divided as it may feel right now between the two parties, we ARE one nation)

I have to admit that I am glad to live in the U.S, even despite the fact America has become increasingly unpopular over the last few years, despite the fact I have been sickened to hear the wild rumors slung from both sides of the fence that cost both candidates some validity in my mind, despite the fact we have a lot of problems right now, and despite the fact that I am very much an "independent" or "liberal" which leads me to feel that the party system doesn't work very well.

But it is precisely because of the overused concept of "freedom" that I am able to have an opinion- to uphold my main mindset of true equality and freedom- that we, as people (not just as Americans), should be allowed to live our lives in the fullest way possible. I believe the government should not interfere much with people's lives, but rather that "the people" should take it upon themselves to see why they should care and get involved with their community. Idealistic, I know.

In other countries, I might be told to keep my yap to myself. Here, I am allowed to actually try to make a difference. I don't know as much about other countries as I'd like, but thanks to the program at school I am in, I have heard first-hand accounts from people I am glad to call friends - an opinionated outgoing white woman who came from South Africa, a bold and funny Aussie, and a sweet intelligent girl whose parents immigrated from Iran.

The others in my program, though they may "just" be Americans, still continue to offer new perspectives to me in addition to the ones who can offer a look beyond America's borders.

And what a look it is. I have been forced to explore issues that most people would rather ignore but I have learned so much about the differences of people, yet I have seen how very similar people are, as cliche as that sounds.

I am proud that this is the first presidential election I am able to vote in and that so many of my other peers are taking it upon themselves to learn about what candidates support what issues and to get out there and actually get involved.

Okay, you may not like any of the candidates but you can't deny that today is a historic day and that maybe, just maybe, the next four years will be good for America.

It's interesting because I have always hated the word "disability"- I still do. I don't think it's a good word to use because it has negative connotations at times. Yet, in the past few years, disability rights and issues have gotten more focus than usual. This is great! My youngest brother is Autistic. I capitalize this word because it seems like it should be. He is a magnificent singer, an adorable boy, a good reader, and many years ago, it would have been common advice to put him into an institute. It would have been common advice to put me into one too, because of my deafness.

How far we all have come, as a nation that promotes equality and access.

So, when I thought of the issues that hit closest to home for me, I immediately thought "disability rights." Where do the candidates stand on bilateral implants, which some of the amazing bloggers, like Jennifer and David, struggled for so long to get approved for? Where do they stand on captioning more things? What about education for "special-needs"? Unfortunately, they aren't asked those very specific questions. But we can look at where they stand on health care, social security, or education, and gather a probable idea of how it will affect closely-tied things.

I want the future generation, some of whom may end up with autistic brothers too, or deaf, or blind, or with ADHD, to not have to struggle as hard as some of us have needed to. I was fortunate to have the state pay completely for my implant surgery, which was approved within weeks. Others wait months and even years (Jennifer and Amanda Conde)

I believe though, that change in those areas will mainly happen thanks to the perseverance of "local" people, not the big shots up in D.C. We will see better laws being made to protect, to bring access, to fund better, and whatever else is sorely lacking right now. It may not happen as soon as we hope. My mother had to continually advocate for me for years, to get interpreters and to mainstream me before it was common to do so.

Today, I will say that yes, I have a "disability". But I live in a country that allows so much free speech that we can push for laws and new policies, for ourselves, each other, and people who haven't even come yet.

As flawed as America is, I still have hope.

So, go out there and vote!!!!