When we moved to this city block last October I debated whether or not to get a deaf kid sign. I kind of decided against it. For one, I didn't think it would make any difference. People would speed regardless. For another, we've taught Ellis basic street safety. He's a cautious kid and takes pretty good care of himself. Besides, I'm usually with him when he's out front. I figured a deaf kid sign was sort of moot.
We're getting a new block captain, though. The old one is just that: old, and infirm. Our block has degraded some over the years, so I'm told. The woman who is taking over grew up on the block and has recently moved back. She's been really proactive about improving some things around here (and believe me, plenty needs improving). She took the initiative to get me an application for a deaf kid sign and she turned it in. She seemed to think it would make a difference. So we got the sign.
Ellis has been really into street signs lately and knowing what they all mean. He is pretty excited that there's a street sign just for him.
Part the First: wherein encounters with the public library lead to benefits beyond my wildest dreams.
I am attempting to renew our overdue relationship with the public library. (heh, heh.) The public library and I have a rocky relationship that is based on fines. When we moved to this house last fall we changed counties from the 'burbs to the city. About a month ago I finally got a library card for the Free Library of Philadelphia. This is what our public library is called, because Ben Franklin invented it and back then what made it distinctive was that it was free. (Except I can't remember if that meant Free, as in no charge, or free, as in anyone can use it, or something else, but "free" is the operative word) (Except in my case, where it should be called Fine Library of Philadelphia--in my defense, though, I'm not doing too badly. under $10 over the month.)
Since it is for the sake of the children that I subject myself to this torturous remembrance of immanent due dates, we've mostly emerged from our local branch carrying piles of kids books and DVDs. And they're really enjoying that. Did you know that Scholastic has recorded tons of books onto DVD? So that means that it's like Not-as-bad TV time, because they're sorting of reading a book, too. See, smart parenting right there. (/sarcastic)
But a few days ago I was browsing around the Free library website looking for something to put on hold for me, since browsing in a library with little ones in tow is basically a non-option. I came across their online databases.
I have access to Oxford Music Online--including Grove Music!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have been without any access, save for Google, these past years, and it is like coming across an oasis in the desert. I'm giddy, my step is a little lighter, and I can stand a little taller. I have Access. The hallowed gates to academic research are now open to, yea, even this Non-affiliated Mother of Toddlers.
Part the Second: wherein Access affords interesting discoveries.
The other big thing happening for me right now is that I'm applying to grad school again. Right now I'm in the throes of GRE prep. *groan* But soon I'll be writing essays and whatnot to get my applications together by December.
One of the things I've been doing in order to focus myself to write these eventual essays is articulate exactly which avenues of research I'm really interested. My main area is, of course, late medieval/early Ren. music history, and my main work will probably be done in that area. But there's a lot of interesting things happening in scholarship that can open up different kinds of questions.
The world of Deaf is now an inextricable part of my life, thanks to my son. Before Ellis was born, I didn't know anything about deafness or deaf people. Now, though sometimes it feels like deafness is this little insular minority, it also feels like I see it everywhere now. I never bumped into Deaf people before I had Ellis, now we do all the time. I say this a little jokingly, because I very well may have before, but because we weren't attuned to signing and deafness, we may never have know. Now, if we're signing or see someone else signing, it's a lot easier to make that connection.
I'm rambling a little, but I guess I'm asking the question, what if I put on the eyeglass of deaf and then looked at teh world of music history? how would I understand the music experience of deaf people? Where would that take me?
First, there's Beethoven. What did he have to say about being deaf? There's obviously the Heiligenstadt Testament.
...thus it has been during the past year which I spent in the country, commanded by my intelligent physician to spare my hearing as much as possible, in this almost meeting my natural disposition, although I sometimes ran counter to it yielding to my inclination for society, but what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life - only art it was that withheld me, ah it seemed impossible to leave the world until I had produced all that I felt called upon me to produce...
I am sure there is stuff out there on Beethoven and deafness.
Then, there is also Deaf people who make music. I will certainly explore that.
But then, when I plugged deaf into Grove Music I found something I wasn't even looking for.
Contemporary German composer Helmut Oehring (b. 1961) was born the hearing child of deaf parents. His first language in the home was sign language. (I'm presuming German sign language.) He incorporates deafness and signing into his compositions.
Oehring's compositions derive from the complex physical and facial expressions of sign language, which he notates as music. His works outline bleak narratives that address the chasm between individuals and the futility of communication. His early compositions are concerned with stages of agony and human actions that lead to death; in later works, speech as a symbol of the impossibility of human discourse becomes the central musical subject. Much of his work can be considered social criticism. Several compositions include deaf people among the performers.
(Gisela Nauck. "Oehring, Helmut." Grove Music Online. Oxford Music Online. 11 Aug. 2010 .)
He uses deaf people signing as soloists in some of his works. Look at the instrumentation for a couple of his pieces:
* Wrong (Schaukeln-Essen-Saft) (B. Sellin, Oehring), deaf person, ob, b tpt/trbn, vn/va, elec gui, perc, live elec, 1993–5;
* Self-Liberator (Oehring, R. Taumel), 2 deaf people, tpt, ens, 1994
* ER.eine.She, 1v + b fl, 3 deaf soloists, vc, installations, elecs, 2002
I'm wondering, do the soloists themselves have to be deaf? or just sign? (I'm inclined to think the former.)
I tried to find a good YouTube clip. This is the best I could find, a sampler of his works. Skip ahead to 5'10" to find the piece with the deaf soloist.
I don't really know what she is saying. German Sign Language? and the highly stylized signing for the context?
I find the staging to be really striking. Distinct contrasts between light and dark. Her face and hands stand out against the dark background, no doubt to ensure that they are clearly seen.
Anyway, can you tell I'm totally fascinated by this? Guess I'll have to reacquaint myself with the German language again.
In a week, Ellis will begin his first experience having a personal ASL interpreter in a hearing setting. He will just barely five years old. He has been in great situations thus far. At school, he has full access to communication, because he goes to a Deaf school. At home, we do our best to also provide as full access as we can. And we, his parents, bridge the gap as best we can in other situations, such as extended family or church. We have been blessed to be surrounded by so many supportive people in our families and churches, they will often reach out to Ellis as best they can, as well.
Next week, though, our (former--but we still have a lot of connections) church is hosting its annual Vacation Bible School. Five mornings with fun, games, crafts, and Bible stories, verses, and lessons. I helped out last year, so we were going, whether Ellis liked it our not. And he did not. It was a little disheartening for me to see him pulling away. But it was totally inaccessible to him. The people around him did their best to help him feel comfortable, and we were around these people all the time, it wasn't like they were strangers or anything. But from Ellis's point of view, VBS was one big FAIL. And it really highlighted for us that it was seriously time to step it up in notch in providing Ellis access at church.
Fast forward to sometime this spring, the VBS director called me and said, "We want VBS to have a Deaf outreach component. What do you think?" I was floored! Wow!! That's awesome!!! But none of us had any idea what that would look like. We found an interpreter who attends and interprets at another church in our general vicinity. She had some ideas, but she thought if this was going to be a whole outreach component, we needed a lot more time. But she agreed to interpret for Ellis. And she has been fantastic in working with all of us to figure out how this is going to work. Especially since it'll be Ellis's first time having an interpreter.
Meanwhile, we've been working with him in a lot of area. Generally, encouraging him to seek clarification when he doesn't understand something or to ask for more information about a situation. Often he'll come up and ask me "what are doing?" now. We've also been trying to explain to him what it means to interpret.
We had a situation last night, when E was particularly wiggly during church--normally he does really well. So we took the opportunity to explain about what we're doing at church. (Really, this conversation could've happened in any context) And Daddy said (signed--the whole conversation is in ASL, really), "why am I signing?" and E shrugged. And I said, "we're signing because you're deaf. You can't hear. Mommy and Daddy can LISTEN-EARS so we listen to the talking, understand, and then sign, because you LISTEN-EYES. You're deaf. When you LISTEN-EYES, then you understand!" I don't know if being so perfunctory was the right thing. But I don't see any point in skirting around the issue. We're not presenting it like deaf is a bad thing. Just being more intentional about pointing out the differences in our family. And he needs to know why he has an interpreter, I think.
I'd appreciate any thoughts you, Deaf adults have.
So why three parts? Because I had more thoughts than I had time at a time to write. And because what I wanted to say falls roughly into three points: background, what's going on now, and the obligatory abstract reflections.
Incidentally, this is Christopher writing.
I'm pretty sure we've said this stuff before. Anyway, it won't be news to anyone who follows us that biculturalism guides our thinking re Ellis, a commitment to which the name of this blog attests. But in church, the stakes are raised. We put it to our pastor this way: we want Ellis to know that the gospel is for him, regardless of his culture and language. And we want him to be able to engage the gospel in his own, native language and culture.
So there's that. And then there's the fact that being in a church means being with people. And that means more than just communication, thought it certainly does mean at least that much. What it really means is that Ellis knows he is loved by these people. Realistically, we don't expect anyone to get as good at ASL as we are (not that we're all that good). But Ellis ALREADY sees people's efforts and is responding to them.
The other day we couldn't go to prayer meeting, but Ellis wanted to go. So we sent him with someone else who was coming by. That's right, we sent E to prayer meeting by himself. And he spent the time before and after, while people were chatting, to teach people the signs he was using, starting with the alphabet.
He tells us that he wants to go to church. He talks about it during the week. And this is after only a few weeks attending. So maybe what we're feeling is vindication. We've always said that a little goes a long way, that we don't expect people to master the language but just to try, and that would be enough. And as it turns out, it's more than enough.
We know that eventually Ellis will have to learn how to function in a Hearing world that doesn't understand or won't accomodate itself to him the way we do. We know that eventually he'll be in a church where people don't make this kind of effort. But he'll be an adult by then, and settled in himself and in his relationship to the Gospel. But for now, we think this is the way we, and the Church, fulfill our vow to raise Ellis in the nurture and admonition of the Lord.
I'll be writing more on this from time to time. But in the mean time, thanks to everyone who commented on parts one and two of this. Your comments mean a lot to us. And we especially appreciate Deaf people sharing their own experiences growing up. They instruct and encourage us.
Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.
Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.
Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.
However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.
The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.
From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.
I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.
It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.
He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.
He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.
How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.
In June of 2005 our son, E, was born. E's birth was the bright spot in a very difficult year. In the wake personal loss, regret, and tragedy, E's arrival brought us joy and peace.
The two month mark has passed from E's CI activation. He's doing well, especially expressively. When he's wearing the CI, he more regularly turns to his name/other sounds. And he's consistently saying "bye-bye" and "aaah" for airplane. He's imitating speech sounds very well. I'm continually amazed at how great his speech therapist is.
He's also completed two weeks of 2yo preschool/playgroup at PSD. It's three mornings a week. It's been a bit of a tough transition, for him and for me. I leave him crying his head off, but he calms down shortly after I leave and has a great time. He has two good friends, especially, who are from Deaf families, so their signing skills are well-matched. (There's a large variety of signing skills in the 2yo class, depending on how much auditory access the student has/how much signing there is at home.) The boys get along so well and hug and kiss, signing ILY, when they leave. Too cute!!
It's been harder for me than I anticipated. I never pictured myself as the freak-out parent. I think I still have guilt feelings over the CI surgery, and I worry that our relationship will be damaged. But I think it will be fine. And the time alone in the morning is really nice, I have to admit. It's a bit far to go all the way home and back again, so I sit in a coffee shop and read. Luxurious.
The other day I picked E from school, sitting with him as he was finishing lunch. A Deaf woman was there with the Deaf grandmother of another student. E sticks out around his table of 2yo. The class is divided at this point. The half of the class with more auditory access are at one table behind the room divider where speaking and listening is more prominent. The other half is at an ASL table. E sits at the ASL table. It's easy for us to open our mouths and talk at home, and voila! he has a speech environment. It's important for him to have good ASL skills, and though, we do sign at home, it's not like being around native speakers.
So he sits at the ASL table, the red light blinking on his CI. The Deaf woman asked me a few things about E. Then she said, "I wear hearing aids. They tell me to get the cochlear and I say no, God made me deaf for a reason, so I wear hearing aids." I smiled politely. But I was frustrated by her statement, not only for the tiny fact that it was tacitly judgemental of me, a total stranger, but also because, I want to ask, "so what's the difference!?!?" He wears a CI, you wear a hearing aid. You are both getting some auditory access. Why is it okay to wear an aid but not an implant!?!? You are still the same person. I don't think a CI has to change someone's deafness. People don't have to be Deaf the same way! I love meeting new Deaf people, but I was a little annoyed by this woman's bluntness. We've gotten a lot of CI flack on the internet but not so much person-to-person. I'm sure this will be one of many experiences.
Anyway, in light of all this, there's vlog made by the president of Gallaudet University, Robert Davila. View Bob's Vlog (it's captioned for non-ASLers). He is interviewing two Gallaudet students who wear CI's. The message of the vlog is very clear, the normalization of CI's--they don't change your personhood, they don't have to compromise your Deaf identity. I have to admit, I resonate with a lot of what he said. It wasn't too long ago when the same arguments and fears were made about hearing aids, but who talks about aids anymore? I know a lot of people will hate this vlog. I will admit, I don't understand unilateral hatred of CIs.
I work hard at understanding multiple perspectives in all areas of my life and work. It's an essential tool for scholarship. Nothing frustrates me more when others don't do the same.
post scriptum: I'm tempted to close the comments to this post, but I won't. I trust that the old CI dead horse won't be dragged up on here again. We've all made our points. So if you don't have anything constructive to say, please refrain from saying it.
By request, I'm posting a bit more about our stop at the American School for the Deaf in Hartford on the way home from our fabulous Maine Vacation. This was our first trip up through New England, and I thought that it was kind of cool how close everything is. Driving through Massachusetts is like reading an American History textbook as you pass each exit. We drove by the exit for Walden Pond and though, 'hey, we should go there on the way home!' Over vacation, though, Chris had been reading When the Mind Hears: A History of the Deaf by Harlan Lane. So when we started talking about Walden Pond again, he suggested that we stop in Hartford instead and check out deaf history sites. (It also worked out at the last minute to see one of my best college friends, who just happened to be teaching violin like 2 miles away from ASD! Woohoo!)
Unfortunately we could drive all over Hartford visiting everything or make it in time to ASD to check out their little museum, but we did get to see the bust of Laurent Clerc. Ellis was thrilled to see the ASL letters sculpted at the bottom. He's obsessed with letters lately. He gets most English letters, but he's a bit stronger with ASL letters. :-) So he had a lot of fun spelling out Clerc's name.
We also took a photo op with Gallaudet and his neighbor girl Alice Cogswell.
I haven't read the history yet, though read a chapter of it on the way to Hartford to be familiar with what we were visiting. Gallaudet was a minister in Hartford, late 18th/early 19th century. The story goes that one day he was watching the neighbor children play. He knew that one of the daughters was deaf and got it into his head to teach her the word Hat by associating the written word with the object. Whether or not she learned it, his passion for deaf education was sparked. Along with Alice's father, an eminent doctor in the city, as well as his good friend, enough support was raised to send Gallaudet to deaf education establishments in Europe to seek assistance in establishing the first deaf school in America. In England, primarily an oralist country, he was met with secretism and general unhelpfulness.
But while he was there, he bumped into Laurent Clerc, a Frenchman who was also in London at the time. Gallaudet finally gave up on England and went to Paris. Clerc was a deaf man, educated at a school that used French Sign Language to teach the students language and knowledge content. Rather than spending long (futile?) hours learning how to speak, their primary motive was restoring their students to knowledge using their natural language. (This was also the time of the Enlightenment in France; it would be interesting to flush this out a bit more.) Gallaudet was excited to start learning sign language but overwhelmed at the thought of how long it would take him to be proficient enough to teach the students in America. He finally persuaded Clerc to come back with him, and together they opened the first school for the deaf in the United States in Hartford, Connecticut. Clerc remained the U.S. for the rest of his life.
So that's the short story. And as we begin our journey with our deaf son, it seemed like the birthplace of deaf culture in the United States was a good place to stop.
E and I are at my parents' for a couple of days.
Hoping to enjoy friends, the dog, throwing rocks in the pond, riding trains, fresh tomatoes and peaches, And I have a couple of brilliant sewing projects to finish.
So back to our regularly scheduled blog-lite. Thanks to all who contributed to a lively discussion here this weekend. You've certainly given us a lot to talk about, as we hope to have contributed just a wee bit, too. Cheers, peeps!
Though I almost never post on my wife's blog, I almost always read through the comments she gets re. d/Deaf issues. Mostly I tend to stay away from commenting, because I have a tendency to take things personally, whereas she is much more measured in her responses. However, I feel like taking this opportunity to reiterate for those not familiar with our story, some of our reasoning about the CI.
It seems that most of the negative reactions to Ellis' CI center on the accusation that we are doing what is best for ourselves, and not what is best for Ellis, because:
1. We made a decision on his behalf, without his knowledge or consent
2. The decision we made significantly alters his experience of being
d/Deaf; which is to say, we have interfered in the development of his
sense of self.
The irony here is that if we really had done what was best for ourselves-- that is, if we had made what for us would have been the easy decision, then Ellis would not be implanted. From the get-go, we had the following concerns about the CI:
1. If we implant him, will we get lazy and stop signing to him?
2. Will he be 'classed' or even rejected by the d/Deaf community?
3. Will bilingualism really work, or is it a fantasy that we can give him
the best of both worlds?
Here was the argument we made to ourselves about these concerns: every one of these worries is really a worry about our own commitment and our own sense of who Ellis is now and who we want him to become. The truly selfless thing to do would be to put aside our own anxieties and our own pride in his d/Deafness and choose the thing that will give him every opportunity to be successful in either or both worlds, as he chooses.
The fact of the matter-- and this comes from years of research, training, and experience as an educator of ESL students, is that there is no substitute for acquiring language at a young age. If a child misses the opportunity to learn language at a young age, it is almost impossible to catch up. Not that many haven't done very well, but they can never equal the ease and skill of the early learner.
To not implant Ellis, but to wait until he is an adult, would leave him at a disadvantage should he decide to keep the implant on. His choice would therefore not be between the best of either or both worlds. It would be between the ease and familiarity of deafness and the labor and discomfort of hearing. Not really a choice, is it?
(A deep breath) I can already hear the critics. They've stopped reading already, and they are already preparing their rants about how the devil parents have ruined their son, made him into a moron (?) etc. Maybe we did make a mistake. Shoot, we've made plenty of those already in the two years of his life and we expect to make a few more.
Thank goodness that Ellis doesn't have to be ruined by them, though. For all the talk here about identity, sense of self, etc., I have to say that our view of Ellis's personhood is limited neither by his deafness nor, should he have been born otherwise, his hearing. I hope that Ellis is a full enough person that whether he hears or not, whether he thinks of himself as Deaf or not, he finds a way to live an honest and honorable life in whatever circumstances he finds himself.
There is no way to save him from suffering. There is no way to avoid limiting his choices in some fashion, try though we might. In the end, whether hearing, deaf, blind, paralytic, male, female or neuter., we all have the same basic choices to make about how we will live with respect to our limitations. The choices that Ellis makes in this respect will determine the quality of person he is, and whether or not he merits our respect (he will always have our love).
UPDATE: (Mom here) We just want to clarify that by "acquistion of language" we don't mean, that in order to have Language he needs a CI. He already has a language: ASL, but a CI will help learn English more easily. Sorry. We gotta run, or I'd try to make this clearer.
Dad meant by "acquisition of language" the acquisition of English, treating ASL as a given, since that is already part of our lives.
In other words, BIlingual.
