In a recent article, “The Distrust Runs Deep on Both Sides?” the author asserts:
It’s not like these parents find out their child is deaf, go on the internet, discover a deaf community sharply divided between the oral and ASL-using camps, panic, and somehow decide they’ll embrace the oral camp while never trusting any single living ASL-using deaf person ever again. Doesn’t such a supposition seem ridiculous to you at the very outset?
And it does indeed seem ridiculous. However, in my own experience as a parent of a deaf child, and in encounters with other hearing parents of deaf children, that sentiment, honestly, is not far from the truth sometimes.
When I first started scouring the Internet, I have to admit, I was very turned off to the Deaf community precisely because there is such deep-seated controversy. I may not have gone so far as to say “I’ll never trust an ASL-using person,” but my first instinct was “I don’t want any part of this.” I wanted to shield my son from a community that seemed would never be welcoming to my son’s hearing family. (I’m not saying this is how it IS, just how I perceived it, especially in the beginning of my quest.) While I’m moderately hard-of-hearing, for practical purposes that reflect my lack of knowledge of and exposure to Deaf culture, I would be considered by most to be a “hearing” person. And it scared me to think that my son being deaf would separate him from his family. Based on what I’ve learned from some Deaf parents I’ve spoken with, the reverse can also be true; they want a deaf child precisely so that child will stay a part of their community, and not leave their family, which is exactly as I felt about my son in our situation. As human beings, we’re really not all that dissimilar.
Our opinions are shaped largely by the people we meet and the things we take away from those people. During the formative stage when my husband and I were learning about options for our son, I met a woman who was very passionate about Cued Speech. And we continue to be happy with our communication choice, and the decision for a cochlear implant. But I will admit– we never saw such a strongly presented case for ASL–although I can attest that other parents of deaf children in my town have been presented with ASL in a very positive way. It partially depends on the Early Intervention coordinator and specialists to whom you are assigned. While most presented us with all of the options available, some seemed to encourage ASL and RSD (Rochester School for the Deaf) and some recommended Cued Speech and our local integrated “special-needs” school. It is a messed up system, and I do not believe that we were presented with all the options equally. But… I also know that RSD does not present all the options equally either. RSD does indeed have speech therapists and audiologists for those that want to go that route. I have a friend whose son has an implant, and attends RSD without being shunned. In that regard, I know they don’t automatically push some “ASL agenda” like the media claim about ISD and other Deaf schools. I know that. But I also know that many of them DO shun Cued Speech. We were ostracized for it (by some individuals there, not necessarily the school as a whole).
The conclusion I drew was that it may just be impossible to get unbiased information on the subject. Everyone is so passionate about whatever their own life experiences have shown them. If they were brought up oral and it failed them, they don’t want to advocate for that. If they were brought up oral and liked it, and like “fitting in” with hearing society, they do advocate for that. If they use Cued Speech, they promote that…. and so forth. Everyone’s unique experiences lead them to a particular path, and I don’t know that any one of them could accurately and without bias present all the options and their pros and cons.
I haven’t figured out how I want the system to work. I haven’t figured out the ideal solution. Have passionate people from all camps present their arguments to parents and let them decide? Well, that’s going to overwhelm the parents and many of them (especially those who don’t do more research for themselves) are going to be reeling from the information overload and probably not know what they want to choose. I can say first-hand, it is TOUGH in the beginning, being presented with all these decisions– school options, communication methods, doctors, surgeries, risks, mainstreaming, interpreters– all the while just wanting what is best for your child, but being scared to death that you are going to screw it up, make the wrong decision, alienate your deaf child, and have him come back as an adult and tell you that you did it all wrong. It seems like a “forever” decision. Parents make them all the time, but this is so far out of the comfort zone of most parents, especially if it’s their first child. There are no chapters in those parenting books entitled “What to do if your kid is deaf.” They don’t know where to turn, and they are afraid if they turn to the wrong one, they will scar their child for life.
When I started reading and watching information on the Internet, I read many, many discussion boards, threads, comments, Youtube videos, professional articles, medical journals, hearing people’s blogs, and deaf people’s blogs. And some of them got ugly. Personal attacks. Unfair judgments. Extreme opinions on all sides. And no, it didn’t just come off as a bunch of angry Deaf people. That wasn’t it. I didn’t just see a bunch of people who felt slighted and were therefore pissed (although some rightly so, I might add.) I saw a confusing mix of opinions and controversy that almost scared me away completely.
Like I said before, our opinions are influenced by the people we meet. I met a deaf adult who became influential in my life. He uses Cued Speech. He had a blog all about his decision to get a cochlear implant, and when I started reading the blog, it turned out he was scheduled for his surgery just two months before my son’s. So he led us through the process first-hand. He was there to answer my questions (and there were MANY!) about his experiences being deaf, being mainstreamed, using Cued Speech, and choosing an implant. It was amazingly helpful, and I am very grateful I had someone so willing to share his personal story and journey with me. He is 20-something, and all his life was told he didn’t qualify for an implant. Suddenly he saw a different doctor, and it turned out he did qualify, and he decided to do it.
Now granted, this is not someone who was a part of Deaf culture. He grew up in a small town where he was the only deaf kid. His parents chose Cued Speech for him, and it served him well. (On a side note, the implant was not a cure-all for him—he still does use Cued Speech, as he expected going into the surgery.) But my first introduction to a deaf adult was this one: someone who was not part of Deaf culture. He himself had horrible experiences in his life from Deaf people who shunned him because he didn’t use ASL (a decision that, really, was made by his parents and that he had no control over). Hearing his story, I started thinking, well, if members of the Deaf community did that to this deaf cuer of hearing parents, my son would experience that as well. And I wanted to protect him from that. (Later, I met a Deaf adult who uses Cued Speech as her primary mode of communication, but also is fluent in ASL—revolutionary, I know. The people we meet…) Thus my opinions have evolved, and continue to evolve.
I know the blame goes a lot to doctors and to “the system,” who teach parents that the natural order of things is: confirmed deaf, visit an audiologist, then amplification. That is crude summary of how the broken system worked in my experience. Doctors and “the system” aside, a lot of my fear (I wouldn’t call it “distrust” like that Journal Gazette article did) of Deaf culture comes from my own observations and perceptions of Deaf culture as I experienced it—through individuals I met, and largely through things I read on the Internet, open debates and personal attacks. And a lot of misinformation. Imagine making a particular decision, and then reading a lot of other people bashing your chosen method, but using accusations that simply are not true. (I find this true of anything we believe or hold dear—people who attack another religion based on assumptions of beliefs that are not accurate, etc.) People get especially defensive not only when others disagree with them, but when they do so with faulty reasoning. (Hence, why I no longer lump “the Deaf community” into one all-powerful, unified opinion as I did when I first was presented with this plethora of information.)
One observation I made from all the negativity in the online world (again, this may not be true, but it was my perception at the time of at least some people in the Deaf community) is the notion that “they” somehow have claim over my son because he’s one of “them.” I understand that many people may disagree with the decisions I make for my son. But he is my son. And I have made the best decisions I can for him, with what I believe to be his best interests in mind, even if those ideas are completely different from the ideas of other parents in the same situation; they also have the best interests of their children in mind. The lack of respect or even just tolerance for these differences continues to be very discouraging to me. And it’s strong opinions like these that are the first window many parents have into a Deaf world. To say it is off-putting is an understatement.
I am sure that not all people in Deaf culture are extreme and intolerant. Since my initial impressions, and since meeting more Deaf people that prove the opposite, I know there are also many tolerant people. But it’s the condescending extreme people of the world that get noticed the most. Unfortunately, those are the ones that seem loudest, the ones that make a drastic negative impression. It doesn’t make hearing parents want to learn about Deaf culture; it turns us off to it completely.
In regard to the current controversy with ISD, I can understand the frustration that comes with having decisions made about you without you. The system is flawed at best, perhaps closer to broken. Obviously, I will never understand what it is like to be in the shoes of a person deaf from birth. I can sympathize, try to compare it to things in my own life, but I won’t understand completely. Likewise though, Deaf adults will never know what it is like to be a hearing parent of a deaf child. By that, I am not implying that I love my child more or any differently than deaf parents love their children; that is ridiculous and not at all my intention. What I am saying is that deaf adults will never know what decisions they would make for their child if put in my situation. Yes, now, you may see the value in Deaf culture, believe strongly in ASL, and think you’d never choose an implant. But that is not from the perspective of a hearing parent. It’s easy to judge and say what you would do in that situation, but you honestly do not know, just as I do not know what I would choose for my child if I was deaf.
I absolutely believe that deaf people and the Deaf community should be involved in deaf education decisions and the options being presented to parents. I wish very much that I had met Deaf adults earlier in my life, certainly earlier in my son’s life. And I believe that hearing people should make a better effort to communicate with deaf people in their lives by learning ASL, or at least by being willing to write things down, and not force deaf people to do all the work learning to speak and lip-read. But at the same time, I also didn’t necessarily want my son to grow up having to rely on interpreters and experience the same frustrations that have been described by many deaf individuals.
Going back to the original quote: “It’s not like these parents find out their child is deaf…” Perhaps someday that notion will, indeed, be ridiculous. But from my front-row seat through the journey, the sharp divisions in the Deaf community may cause more alienation of some hearing parents than the Deaf community realizes. The reaction is not that simple nor drastic, and there is plenty of middle ground for these “panicked parents” to run to, but the fact remains that controversy can be confusing, frustrating, and isolating. It can scare some parents off fairly quickly, especially if they aren’t willing to sort through and try to learn about both sides of each argument. And if they never meet a Deaf person that demonstrates otherwise, the misleading, negative impressions may, unfortunately, be the long-lasting ones.