Blog post | A Flawed System | Deaf Echo

A Flawed System
By Joanne Anauo on October 6, 2011
There was a brief time when I could not have cared less if my deaf son ever knew any ASL. I wanted him only to be oral. I figured if he got a cochlear implant, he wouldn’t “need” sign language, so why learn it? As irrational as it sounds, I almost feared him becoming part of an exclusive Deaf community and shunning his family because of it. That idea faded quickly and seems ridiculous to me now; as my son is learning to speak with his voice and with his hands. I hope he will be able to be a part of mainstream society, but also be able to communicate with other Deaf people, whether or not he later chooses to be a part of the Deaf community. Now I see the value in my son meeting and being able to communicate with other people “like him,” and learning a visual language even if he can hear.

I have learned many things in the last two and a half years since my son was diagnosed profoundly deaf. But in hindsight, there’s so much more I wish I would have been told. Most of my knowledge came from self-education via the internet, seeking out resources and people, and being blessed in finding a few individuals who helped shape my attitudes and evolve my opinions. I am glad that I now can assist other hearing parents of deaf children as they grapple with the same decisions that I faced—about communication methods, education options, and what methods might work best for their particular family—but I wish there were better ways in which we were presented our options.

I knew Aaron was deaf long before we had confirmation from an audiologist; though he failed numerous OAE tests early on, he managed to “pass” a more subjective audiogram twice before I could convince the medical professionals that my 12-month-old had outsmarted them and had learned the test and knew how to respond (same way my own hearing loss went undiagnosed until the age of 13). Because I already sensed that he was deaf, I began my own research long before talking to the audiologist. For that reason, I believe I found more complete and accurate information than I might have otherwise if I had known only what the doctors informed us of. And I do not regret any of the choices we made—for Aaron to begin ASL while we also learned cued speech, for him to receive a cochlear implant at age 22 months, and to be mainstreamed. What I do regret, however, is how flawed the system is and what little and biased information is given out to parents.

It is generally assumed that any hearing parent of a deaf child will automatically want that child to hear. This is probably a fairly safe assumption, especially as a first reaction from most hearing parents. But even in the Rochester area that is home to a large Deaf population, the doctors’ first (and only) instinct is to say, “I’m sorry, Mrs. Smith, your son is deaf. Here’s some literature on how we can make him hear.” (They give you “the news” in a tone like they just told you your dog died.) I know there is a vocal Deaf population nearby. Why didn’t the hospital’s brochures include a contact number for one of its members? Where were the links to websites and colleges to learn ASL?

Like I said, I absolutely do not regret choosing a cochlear implant for my son. But I do wish we had learned more ASL earlier on. We have a vocabulary of several hundred words and can string together basic sentences to communicate the needs of a preschooler, and we are still learning more. But why were we told that, in order for our son to learn to use his voice, he must not rely on his hands? I am glad we did not take this advice. I am beginning to see why so many Deaf people feel that their language is slighted. Ultimately, we’d like for Aaron, as well as ourselves, to be able to sign and speak, and both of these communication methods are developing well for him. But it’s frustrating that we consistently encounter doctors, even friends and family, who do not accept the validity of Aaron signing, and even fewer who are willing to learn any signs themselves in order to communicate with him. I’ve had people say, “I bet you can’t wait to hear the words, ‘I love you, Mommy.’” Well, yes, I do hope that Aaron’s hearing through his implant is good enough so that he can develop oral speech; but he already says ‘I love you, Mommy,’ and has since he was about 17 months old. But when I tell someone Aaron “says” something, they say, “Oh, you mean signed something?” like that isn’t good enough. Trust me; seeing “I love you” means the same thing to a parent as hearing it. We’ve even had people surprised by the fact that we are also teaching our eight-month-old hearing daughter ASL. “Why would she need it? She can hear,” they say to me, almost incredulously, as if it never occurred to them that she might want to communicate with her brother, and that hearing babies also can benefit from signing, before and after they can communicate orally. I try to give them the benefit of the doubt, and optimistically believe that much of this incredulous attitude is due to ignorance, not malice. And so I try to keep my responses positive and informative, rather than spiteful.

I know that many arguments have been made that society values oral speaking over signing, and in my experiences, I have observed this to be accurate for the most part. Sometimes though, I wonder if there may be another factor, especially in this country—the value not only of voicing, but of English. I observe ethnocentrism many times from people who detest parents teaching their young children a second oral language. I know people who are upset by bilingual children’s shows like Dora the Explorer, and even a Spanish word-of-the-day feature on Sesame Street, for one ignorant reason or another that I won’t delve into here. So perhaps it’s not just that people don’t value ASL because it isn’t oral; perhaps it’s also because it isn’t English.

Thankfully, not every professional we encountered along our journey has been as biased. We have met deaf people who use cued speech and also use ASL, and do not think that the two are mutually exclusive. We have a speech-language pathologist who works with our son to encourage aural listening skills and oral speech therapy, but not in the detrimental, appalling way that I have seen depicted in documentaries of AG Bell and others from a generation or two ago. Aaron’s SLP does not ridicule his speech, does not demand continuous repetition of sounds until he “gets it right,” does not discourage sign, and uses the visual communication mode of cued speech to enhance his ability to understand oral language. Perhaps to an ASL purist, this still degrades Deaf culture by its very essence of teaching oral communication. But in my mind, it is at least respectful.

I know parents whose child’s audiologist told them not to sign or cue if they ever want their child to use his voice, and sometimes parents can be so desperate for their child to be “normal” and learn to speak orally, that they go along with what the “experts” tell them. But this just sounded like nonsense to me. In hearing children who were taught basic ASL before they were able to talk, studies have shown that ASL does not hinder or delay oral speech, and actually helps advance their vocabulary. So why would I think that ASL would inhibit a deaf child from learning to use his voice? I am grateful that we have an audiologist who advocates ASL—at least in limited use until the child can speak—so that he or she has a way of communicating in the meantime. Still, this attitude reflects the value of oralism over ASL, whereas I believe the two languages can coexist.

Despite my observations of the flaws of the system and the people in it, I do not ever sense that there is malicious intent. Some may believe that audiologists only promote hearing aids and cochlear implants because companies like Advanced Bionics and Phonak pay them. In my experience, this is not true; I honestly believe that the doctors and audiologists we have worked with have the best intentions for their patients. Perhaps it is that, like many of the ignorant attitudes I encounter, they are uninformed or misinformed. Or perhaps they are familiar with all sides of the debates and believe in the value of being able to hear and orally speak in order to better assimilate into society. I have a friend who chose ASL exclusively for her son, and was never pressured or demeaned by doctors for so choosing, so perhaps most audiologists only see themselves as an option for those who choose hearing aids or implants, and don’t have some secret agenda to eradicate the Deaf community. This has been my own conclusion as well.

Still, companies like Cochlear Americas, the maker of my son’s implant, use promotional materials that not only suggest they are an option, they suggest they are superior. Even as someone who chose their product, I find some of their literature misleading and offensive. I received an email entitled “And now comes HOPE…” It was about a product they call Hope Notes, a program designed for music enhancement for CI users. But the implication of the very name suggests that before or without implants, deaf people somehow wander around pitifully and without meaning in their lives, just waiting for a company like this to come forth and give them hope for something better. Don’t get me wrong, I am excited that technology is improving and that those who choose implants to hear can do so more effectively. But the point is, in the meantime, they are degrading those who choose otherwise. Granted, Cochlear Americas is a business, looking to gain customers and make money, and probably knows that the Deaf Community is not their target audience. But for those in my shoes, even those who do decide to go the same route I did, the misleading information does not help parents make properly informed decisions, and further breeds stereotypes, ignorance, and discrimination.

So where do we go from here? How can we improve the system? It doesn’t help much just to point out the flaws and point fingers. I know some Deaf advocacy groups have been trying to influence legislation that would provide more options to hearing parents of deaf children. And I am not suggesting that all information regarding hearing options should be suppressed. Where the system needs to change is in how it presents that information, and needs also to offer options of ASL as equally valid. A lot of it is ignorance; I had someone tell me that ASL is not expressive enough (how ironic is that?!) because it has a smaller lexicon. The example provided was that there is only one sign for “big,” and that you can’t sign synonyms like “huge, enormous, gigantic, humungous” etc. Perhaps there is no English-sign equivalent of each of those words, but the concepts certainly can be expressed. I am thankful that I didn’t succumb to these misinformed accusations about ASL, but I’m not convinced that every parent does the same. I’ve heard from many that they look to speech therapists, doctors, and audiologists, because “they’re the experts,” and parents defer to them for what they assume will be proper guidance. So maybe colleges with programs for audiology and speech-language pathology specializing in deaf relations should start educating their students in ASL as part of the curriculum (though some already do) so that future ENTs, audiologists, and SLPs will have a more enlightened view of ASL, and inform parents of that option. In my experience, learning ASL was presented almost as a daunting task; I’d hate to think that parents choose implants for their children simply because learning ASL seems too difficult. I know a family that implanted their daughter without understanding much about it—how the technology works, what the surgery involves, how much speech therapy is involved, that their daughter’s hearing would develop gradually over time, and not instantly like the flick of a switch. And until she does gain enough access to sound through the implant and learns to speak orally, she has no means of communication in the meantime because they are not using a visual language or communication mode. Though they made the same decision as my husband and I in choosing a cochlear implant, the fact that they entered into such a commitment without being fully informed about it frightens me, but speaks volumes for people’s blind trust in the medical community. This unwavering faith is exactly why accuracy and thoroughness of information given from doctors to hearing parents of deaf children is so crucial.

Even once we decided that sign language was important for our son, finding good ASL resources wasn’t as easy as it could be. We tried to find children’s DVDs that teach sign language, but we never found one that was geared toward deaf children. They all involved a lot of speaking of English words and then correlated to an ASL word, and many used music to teach signs, in a way that it was obvious the target audience was hearing children. My son now loves the PBS show “Signing Time,” and is practicing his signing while he learns English words he hears on the show, and vice versa, but it was not a good show for him when he was younger, before he had his implant. I wish someone produced a good program aimed at a deaf audience. There are several good ASL websites too, but while they are good for learning vocabulary, they do not teach grammar, syntax, and sentence structure. Many parents may not have the resources to take ASL courses at nearby colleges, and don’t know where else to turn, and so learning ASL can indeed seem like a difficult task, and may discourage some parents from learning it. For us, it has been challenging to teach our son as rapidly as he might learn, as we, ourselves, are still learning. We initially lacked the resources to find local Deaf people (surprisingly, the Internet isn’t always perfect for finding everything.) Perhaps introduction to Deaf adults early on would help hearing parents learn ASL more quickly, and also help them recognize the false statements they may hear about ASL. Maybe it doesn’t entirely convince parents that their child should join the Deaf community, and maybe they still choose hearing aids or implants. But at least their decision is well-informed and they overcome any bias against ASL… and develop respect for it.

Click to expand...

I know people who are upset by bilingual children’s shows like Dora the Explorer, and even a Spanish word-of-the-day feature on Sesame Street, for one ignorant reason or another that I won’t delve into here. So perhaps it’s not just that people don’t value ASL because it isn’t oral; perhaps it’s also because it isn’t English.

Click to expand...

Jazzberry said:

I’ve often wondered why so many professionals in the health care and education fields downplay the advantages of ASL and even discourage its use.

.

Employees of a clinic for the hard of hearing have claimed to me that ASL prevents children from becoming proficient in English and they would send me links to the studies that prove this. No one has ever followed through -- probably because no such study exists. I have looked for those studies on my own, and I haven’t found anything that was recent. All the current studies show that knowing ASL only comes with advantages.

I have witnessed “friendly” arguments between some of those employees and some hard of hearing clients who chose to identify as Deaf and become fluent in ASL about the value of ASL. It appeared to me that the employees had a better relationship with those clients and connected to them in a way that they did not usually connect to the pre-lingually deaf or hard of hearing clients who had followed the model they endorsed -- hearing aids only and no ASL.

Didn’t they make the connection between ASL fluency and better social skills for those pre-lingually deafened? How could they not? It was right before their eyes and there are also studies that show the link.

On another forum about skeptical thinking, I’ve come across the idea that one of the biggest blinders is the one created by paychecks and funding. But still! I personally think that anyone that discourages ASL in this day and age, especially to those who are deaf and even more so to those who are pre-lingually deafened, has a lot to answer for.
.
Concerning this quote from the OP --

I think many people will automatically resent anything that increases the bar as to what is expected to being regarded as educated. America is probably one of the few countries where you can only know one language and still be regarded as well educated.

Click to expand...

rick48 said:

I think this blog is both informative and interesting and goes a long way to confirm what many of us have already stated about cochlear implants and ASL not being mutually exclusive. I guess what I take issue is with is this insistence that doctors should be presenting ASL as an option to parents when their child is first diagnosed as deaf. I want my doctor, especially a cochlear implant surgeon, to present me with medical options as that is his/her area of expertise. I would not and did not consider a doctor's opinion on language choices to be of much value as that is not his/her area of expertise. I also do not get hung up on what a product is named as I am more concerned with what it does than what it is called. As for marketing and advertising, well that's what it is, I know that it is not the same thing but when was the last time you got a hamburger from McDonalds that looked anything remotely like the picture of it on the menu? One of the best advertisement for cochlear implants has, is and always will be the recipients themselves, especially the adults. They are who we sought out when considering the implant for our daughter and I believe that is what anyone considering an implant for themselves or for their child should do as well.

Finally, while I do not have any reason to doubt the blogger's story about how uninformed the family she mentioned was about the ci and all that it entails; placing that blame on the medical community for the parents' ignorance is misplaced for it falls squarely upon the parents themselves. Having known and personally talked to hundreds of parents who have made the decision as well as many members of the medical community involved with cochlear implants, how the technology works is both explained and made available to parents at many steps along the decision making process, as well as the need for, and the importance of, post-ci speech and language therapy. There is simply no excuse for any parent who has chosen ci surgery not to know how the device works. I have never heard any medical professional or parent describe the process of oral language development with a ci as akin to "the flick of a switch". If these parents were operating under those beliefs in order to make their cochlear implant decision then quite frankly they definitely were not listening to the medical community and did not do their homework by meeting with ci users and their families. Shame on them.

Still, want to emphasize this is a great blog post and one that any parent considering the ci for their child should read.
Rick

Click to expand...

Jazzberry said:

Berry, I agree with a lot of what you say -- but it doesn't take into account that in the American health care system medical doctors have very successfully made themselves the gatekeepers.

They have done this so successfully that although it would make sense for an audiologist to be the first professional to see when one has a hearing issue -- most people's health care system and even some have set it up that one has to see an ENT first. In some states before you can purchase a hearing aid for the first time you have to get a medical waiver from an ENT and not an audiologist.

Based on what each professional's area of expertise is and based on what each professional's routine and non-invasive exams can tell us about our ears and our hearing, that simply doesn't make sense. (Well, at least not to me. If someone thinks it does make sense and can explain it -- please do.)

So given what a great job that medical physicians have done in PR, marketing , business and the law -- I am not surprised that many people do trust their physician to actually act as a gate keeper to all and anything that has to do with health regardless if it has to do anything with what the specifically trained for, and rely on what they have to say.

I agree with you that the patients are wrong, but I think its a mistake that is very easy and understandable to make.

Click to expand...