Archive for June, 2009

Respecting Choices

Friday, June 12th, 2009

Note: it has come to our attention that DeafRead included a link to our blog without our authorization.  The inclusion of our post Respecting Choices on the blog aggregate DeafRead  in no way represents an affiliation with DeafRead or sponsorship of DeafRead by Auditory-Verbal Parents.

Amy: The headlines lately have been about the case of the boy who, with his family, is resisting chemotherapy for a highly-curable form of cancer.  How does this pertain to our blog?  Frequently, we parents of kids with cochlear implants are given the riot act about choosing to implant our children (and spoken language) for our children before they are adults and “can choose for themselves.”  When is something a parents’ right, and when is it the right of society to decide– or, in this case, the right of a small faction of Deaf Culture advocates to decide?  Recently, a group calling themselves Deaf Bilingual Coalition has argued that all children have rights to sign language as their primary, native language.

Melissa: The question is where is that line that defines parents’ rights vs. the child’s rights?  When can or should the government step in?  In the case of this boy, I think it was absolutely right of the courts to step in and order his parents to provide him with treatment.  He has a highly treatable form of cancer, and, by denying him treatment, to me his parents were committing child abuse because otherwise he would most certainly die.  Another instance I believe may be on the same side of the line is childhood vaccinations.  While I do believe parents should not have to vaccinate a child because of medical reasons, such as allergies to an ingredient in the vaccines or a family history of autism following vaccines, I do not believe that schools should accept children who are not vaccinated because the parents choose not to for religious reasons.  While the greatest risk is certainly to the child, the child also poses a risk to those who are immunocompromised.

What I feel is firmly on the side of the line of unequivocal parents’ rights are choices in deafness, both medical and educational.  During Rachel’s early years, we were verbally attacked by an ENT, an audiologist, a school principal and medical professionals for not teaching her to sign.  They gave us their “advice” despite our not asking for it.  Once cochlear implants in children began, especially once they received FDA approval, the signing deaf community became vicious with statements, including saying that hearing parents are incapable of raising deaf children and that their children should be taken away from them and raised in the signing deaf community.  (The rebuttal I always wanted them to answer was whether this also meant that they were unequipped to raise their hearing children and so should have the hearing community take them away.)  Cries of “child abuse” for implanting our children were also frequent.

What amazes me is that this type of absurdity still continues today with extremist groups, such as the Deaf Bilingual Coalition and Audism Free America, fighting to take away parents’ rights to make decisions about their children’s mode of communication and whether or not to implant their children.  We could so easily turn the tables and point out that, in this day and age with the now 20+ year history of implants in children proving how effective these devices are and how greatly children who learn to hear and speak with CIs can benefit, perhaps it is child abuse for parents to intentionally opt not to implant their deaf children and to raise these children with ASL as their only means of communication.  When a child is implanted at a young age and is taught to use that CI hearing to learn to hear and speak, that child can then grow up to make the choice of communicating primarily through spoken language or through sign.  However, a parent who opts not to implant and to raise a child only with sign irrevocably takes that choice away from that child because, while children can learn to sign at a later age, the window of opportunity for the brain to learn to hear starts to close greatly by age 3.  Thus, one might argue that the parents have limited that child’s future options.

Do I think, though, that there should be a law mandating that all deaf children receive CIs? – Absolutely not because, as much of a proponent as I am of CIs and the Auditory-Verbal approach, I am even more of a proponent of parents’ rights to make this choice.  I was amazed at the gall of those who gave us their unsolicited opinions and provided us with only biased information when Rachel was a baby.  What I have worked for over the past 22 years is for all parents to have access to accurate information so that they can make an educated choice.

Amy: I agree regarding parental choice.  There are many areas in which our country ensures wonderful freedoms… and having the choices regarding their children’s’ upbringing is one of those freedoms.  We have the right to homeschool, to choose a private school, to take advantage of free education or some mix of those three.  We have the right to spend time more with our kids or choose a profession– or a mix of both.  Believe it or not, in some countries, when your child is a toddler or preschooler, you don’t get to be home with them, like it or not!  We have the right to choose their physician, choose what activities or music lessons would suit them best.  We have the right to refuse medical treatment that we deem inappropriate, and we can modify vaccination schedules based on their physical needs.  Parents decide religious education.

Similarly, the specifics of language are up to parents.  Of course, I believe that listening and speaking will allow for the most opportunities in a world where most people use spoken language, but there are children who will never be able to speak for physical reasons.  And, if parents decide to raise their child in a purely ASL environment, that is their choice.  I may disagree with that choice if the child is capable of speech, but I have no right to intervene.  Recommend if asked?  Yes.  Create hate-filled emails and send them?  No.  I receive hate mail regularly from apparent adults who think it’s appropriate to call me a racist and proclaim that I’ve committed GENOCIDE (!) for giving my children the gift of speech.  Bandying around words like “genocide” is not only unfair, it’s dangerous.  We should save that word for the real thing.

Melissa: Those hate-filled emails and blog posts and comments are unbelievable.  Rachel and I have both received them.  One recent one that she received rambled on for paragraphs and then said that the next time she would hear from this guy would be face-to-face.  We actually filed a police report on that one.  I cannot fathom what causes these people to act so immaturely and so irrationally.  I have even written into the blogs that they do nothing but chase hearing parents far away with their hate-filled rhetoric and that they would do far better to present the positives of their lives.  Yet, they continue to spew hatred and make threats and false accusations.  They really have no clue what it is to be a hearing parent of a child born deaf today.  What’s more, they have no right to try to force their views and ways on us.  Rather, they should only be presenting information positively and let parents make their choices.