Audism? Not Really.

I just got the following Moveon.org petition message in a forwarded email from an on-campus disability awareness group I'm involved with. It's a pretty biased look at some (in my view) exciting strides in hearing-loss research, but it's a typical enough response from Deaf advocates that I thought I'd post it here. Just for the record, I generally don't agree with the big-D deaf community's views on "audism," maybe because I'm not culturally Deaf myself. Audism, if you want to use that word, does exist in the forms of deaf people not being given the consideration and opportunities that hearing people have, but honestly research such as the following is intended to help, not harm. I'm all for stem cell research - I think it's beyond amazing. And, once again, hearing is a wonderful thing too. And, yet once again, it doesn't have to be either-or.

Although this raises the question all over again of whether deaf people should choose between being deaf and being hearing. Jury's out on that one. I've written about it on this blog before, but honestly whenever I return to this issue I get a little tired of thinking about it in such polarized, dogmatic terms.

Any thoughts or responses, bring them on.


Stop Stem Cell Experiment on Deaf Babies

Sign The Petition to Stop FDA's Audism

The FDA has recently approved stem cell experimentation on Deaf infants at the Children's Memorial Hermann Hospital in Houston, Texas. The experiment is to include up to 10 Deaf newborns and infants (6 weeks to 18 months old) to eradicate their being Deaf. The FDA's approval promotes the hidden cultural and linguistic genocide on the Deaf infants and is part of the eugenics to wipe out the Deaf community and our beautiful and precious American Sign Language, which is used by the ASL Deaf community and is one of the top languages studied in the USA.

The Deaf infants are human beings and have their human rights to be created, accepted, loved and supported. The FDA approved experiment will include repeated MRI screenings, possible sedation, injection of untested stem cells for that age population - all which carry long lasting risks and implications. All of this will be done in the name of CURING the infants of a "condition" of which is an ethnicity. (See Lane, Pillard, and Hedeberg)

Being Deaf is not a life-threatening condition and does not cause premature death nor does it bring immeasurable suffering. In fact it does the opposite. Many Deaf people who have American Sign Language and English as part of their life attest to being happy. If the collaborators of the study want a cure - the FDA, the Blood Cord Registry, and the Children's Memorial Hermann Hospital need look no further than ensuring that the infant has access to ASL, English, and Deaf culture. Audism (the belief that to be hearing and/or behave as a hearing person is superior to being Deaf) is the problem, not being Deaf. It is similar to the attitudes that affect minorities like Hispanic people, African-American people, like that of the "Stepford Wives" syndrome -- creating the perfect white, blonde-haired, blue-eyed, hearing baby.

It is imperative that the collaborators of this study (which all stand to have monetary gains from this experiment) be held accountable and that the funding and future profits behind this unethical and inhumane study be fully disclosed and examined.

Sign this petition to tell the President and your Congressional Representatives to stop this horrific experiment.  http://signon.org/sign/stop-stem-cells-experiment

NOTE: This petition is set up through Signon.org, which is a part of Moveon.org.  By signing this petition, you will be added to Moveon.org's e-mail list which you can unsubscribe.  Our Alert is not an endorsement of Moveon.org, we are promoting this petition to fight Audism.

"My Son is Deaf, Finally!"

A few days ago, a good friend of mine sent me this link, and even now, I keep revisiting it in my mind. For me, it's troublesome, provoking, even irrational - but, sadly, not really surprising. I've met plenty of Deaf people who have this attitude about CIs. Be sure to watch to the end:



Still, expressed in this light, this man's sentiments come across as extreme. I keep wondering if he's totally justified in feeling the way he does. Maybe so, in that there is indeed a "double standard" between deaf and hearing people. While it's expected (and taken for granted) that one will conform with the hearing majority, it's not nearly as acceptable to be deaf, and to live as a Deaf person.

But the analogy doesn't quite hold up. Hearing is more than a bias: it's a wonderful ability that enables us to connect more fully with our world and the people in it. While being Deaf may be a culturally rich lifestyle, and while it may carry a unique communicative heritage, embracing Deaf culture will never fully stamp out the isolation that derives from not being able to hear. The two scenarios aren't completely equivalent.

So why the anger? As a recent CI recipient (albeit one who did choose for herself), I can't help but feel bothered by this example of reverse prejudice. This pent-up frustration, directed toward the hearing world, is upsetting. Yes, hearing people very often ought to understand more than they do. But, instead of this pointless antagonism, how about pursuing real acceptance and accessibility?

Sound and Fury

It's been a long time coming, but last night I watched the documentary Sound and Fury, which was nominated for an Academy Award for Best Documentary Feature in 2000. For anyone who has not yet seen this film: please, please do. Run out and get it, in fact.

Sound and Fury explores the story of two brothers, one deaf and one hearing, and their families as they expore their decisions and feelings about cochlear implants. Chris Artinian is hearing, and he and his wife Mari (also hearing, but has deaf parents) have just found out that their young son is deaf. Peter Artinian, Chris's brother, is profoundly deaf, and he and his deaf wife Nita live very much in the Deaf world with their three deaf children. When Peter's 4-year-old daughter Heather begins asking for a cochlear implant, and when Chris and Mari decide to implant their deaf son, chaos breaks out in the extended family. Essentially, the hearing families in the film feel, implanting a deaf child is a necessity for giving the child viable opportunities to succeed in the hearing world. Withholding the gift of the implant, and therefore the gift of sound, verges on "abuse." On the other hand, the Deaf families believe that cochlear implants threaten Deaf culture, sign language, and Deaf identity. They feel that the choice to be implanted, and thus to reject one's deafness, should belong to the child and the child alone. Furthermore, the Deaf families feel, implants are another means of condescension by the hearing world, which treats the Deaf community as inferior. Cochlear implants, in this film, are not simply a "quick fix" or "medical miracle." On the contrary, the decision to get an implant boils down to the question of identity.

This film is well-known and extraordinarily well-done, and I've wanted to see it for a while. I'm glad I didn't see it before I was implanted, though. Before taking that first irreversible step, I did not need any more doubt or controversy thrown into my decision. Plus the video clips of the CI surgery were not something I needed to see before I went under!

Really, the entire documentary was heart-wrenching - even more so because it made me reflect on myself and the path I, and my parents, have chosen. The controversy and sentiments surrounding CIs were not news to me. Rather, witnessing them in this format refocused my perspective. I saw my own struggles reflected in the film's deaf people. When the little girl, Hannah, tried to interact with hearing (or implanted) children who did not sign, I felt her frustration and bewilderment. It came to me in the form of a memory - which, of course, it is. When the deaf father, Peter, told about keeping to himself as a boy because his hearing peers could not reach into his world, I saw myself there too. I recalled an excellent quote from Helen Keller, which a friend reminded me of just yesterday: "Blindness cuts us off from things, but deafness cuts us off from people."

But what I did not feel, watching this film, was the full extent of the Deaf adults' bitterness. I have somehow escaped that. Because I have many wonderful hearing friends, it hurt to see these Deaf people so sequestered from everyone who did not sign. It hurt even more to realize that this was not their own fault, that they'd never had the opportunities that I have. Despite their protests to the contrary, they were isolated - just as, to a lesser extent, I have been. Does their frustration justify their hostility to everything "hearing"? I do not know. I only know that this film stirred the old identity crisis within me. Within the first ten minutes, in which the anger of the Deaf parents toward CIs had become apparent, I sank my chin into my hands and said, "Now they're going to make me feel like a traitor."

And, in their eyes, I am. It's been a long time since I interacted with Deaf people. I understand sign language very well, but my own sign is no longer good, because I don't use it. I found myself relating more to the hearing families in the film. Strangely enough, though, this was fine with me. Perhaps I have chosen to occupy that odd "cochlear-implant world" in between the hearing and the deaf worlds, but this is an extension of how my life has always been.

In this film, I also saw my own parents, faced with the enormous challenges of deciding how to raise a deaf child. What decision would I make in their place? It's complicated. I do believe that the decision to get an implant should be a child's personal choice, rather than a parent's decision. In this way, I do not regret my upbringing in the least - even if a CI would have saved me some of my struggles, it would have been my hearing parents' projection of their desires onto my identity. I had to discover and decide that identity for myself. Thus, my decision to get a CI, even after a lapse of 20 years, has been self-empowering rather than imposed. However, I don't know that I could ever make my own kids go through what I did. I don't know that I could deny them the opportunity to function more normally, especially when the CI is most beneficial within that narrow language-learning window.

I do think there is a middleground, however, that no one in this film saw. It doesn't have to be either-or. Sign language or speech. The doctors, schools, and hearing families who advocate the CI at a young age also urge parents never to sign to their deaf children. They argue that sign language functions as a "crutch," so that the child will never learn spoken language. What these professionals do not realize is that children are such astonishingly adept learners that they can learn more than one language at a time. And denying children the access to any form of communication that they can understand, whether verbal or visual, is abuse. When I was young, one doctor told my parents to do exactly this, to implant me and not sign - words cannot articulate my gratitude that they had the sense not to listen. One of the implanted deaf girls in this documentary, even at five years old, had never heard of sign language. She was perplexed when she saw it. She did not seem to realize that she was deaf. I found something sad, something intolerable about that. Her hearing parents had decided, from her birth, that she must be hearing, like them. And, as a result, a huge shard of her identity was forced to vanish. I am no Deaf rabble-rouser, and there is also tragedy in the deaf child who cannot connect with her world, but still - how awful.

To the readers of this blog: just watch this film. And, after watching, what would you do?

"Deaf Pride"

The theme of my last post made me think of an essay I wrote during my junior year of high school, in which I explore my feelings about being deaf in a hearing world. This excerpt is especially relevant:

* * *

....I have always been stuck in the gap between two worlds, never able to put both feet on one side or the other. I think I have always realized this, but never as vividly as I did while attending a winter camp for the deaf three years ago.

Shortly after arrival on the first day, a small group of kids, including me, gathered around three or four high school seniors and initiated a tepid conversation. Not having the asset of previous introductions, our discussion soon steered to the common factor between us, our deafness. Out of the seven or eight present, maybe three had hearing aids, and only one had a cochlear implant. This boy in particular had been raised orally: that is, he leaned more toward the hard-of-hearing side of the hearing-loss spectrum, and thus had enough sensory ability to get along competently in the hearing world without the assistance of sign language. As a result, his signs were inaccurate and fumbling; the other kids latched on him right away and accused him of being lacking in “deaf pride.”

I watched in bewilderment as their flying hands condemned him an outcast, and though they did not turn on me that day I realized that they might as well have condemned me too. It was then that I first understood that we, individuals supposedly unified by the pride of culture they hurled out so bitterly, were in fact worlds apart. Unable to handle their resentment toward the difficulty and misunderstanding of life in the hearing world, they had chosen to retreat within a hemisphere of deaf isolation. Although I knew such bitterness all too well, I had learned how to keep it on a short rein. I did not know what “deaf pride” was, had no personal sense or experience of it. All I knew, all I had ever known, was deaf shame.

I did not gain the opportunity to reflect on this until well after the camp had ended, and when I did, I felt torn between two worlds. This condition is one I have always struggled with as I attempt to live my life in the hearing world while inherently aware that I am deaf, but not until that point did I literally feel the discomfort of being shoved on the fence. The ideal I had clung to, perhaps foolishly, of a happier deaf existence was now permanently dented. I realized that inherently I was more hearing than deaf. This should have surprised me, but somehow it felt natural – albeit in a cold, empty way. I wondered where my piece belonged in life, if it fit into neither the deaf puzzle nor the hearing one. No distinct mold existed after which I could model myself, and so I was forced to realize that my existence is my own.

* * *

The above experience has stayed with me in the four or five years since it happened. Its truth resonates with me now, more than ever.