20
Jun

Intersex and Cochlear Implant Surgeries

surgeryWhat Do Intersex and Cochlear Implant Surgeries Have in Common? Last summer we had a learning experience when we attended the American Psychological Association’s annual conference and found ourselves in the audience of an intersex workshop. Intersex refers to certain conditions that occur when someone is born with a reproductive or sexual anatomy that doesn’t seem to meet society’s expectations of female or male.

The Intersex Society of North America identifies five critical issues related to intersex. What we find intriguing is that if you read the links below, keeping in mind the words “Deaf” and “cochlear implant” and substituting them where appropriate, many of the points about intersex surgery resemble those made by people who are concerned about the impact of cochlear implant surgery on children.

• Intersexuality is primarily a problem of stigma and trauma, not gender.
Parents’ distress must not be treated by surgery on the child.
Professional mental health care is essential.
Honest, complete disclosure is good medicine.
• All children should be assigned as male or female, without early surgery.

Examples: Physicians and other helping professionals, the media, and the general public have typically interpreted intersex as being primarily a problem of gender. Change this to: Physicians and other helping professionals, the media, and the general public have typically interpreted being Deaf as being primarily a problem of disability.

Parental distress should not be treated with “normalizing” surgery on children, nor should surgeons, endocrinologists, and other non-psycho-social specialists attempt to cover family’s counseling needs. Change this to: Parental distress should not be treated with cochlear implant surgery on children, nor should surgeons, audiologists, and other non-psycho-social specialists attempt to cover family’s counseling needs.

4 Comments
  1. raychelle June 21, 2006

    Fascinating! However, I have to question this quote “All children should be assigned as male or female, without early surgery”. This link explains that the ‘intersex’ label for a child is ‘worse’ than simply saying ‘boy’ or ‘girl’. They continue by saying if parents say “My child is ‘intersex'” – that is worse not because of ‘intersex’ itself, but because of how society perceives ‘intersex’.

    A friend of mine went to a conference and learned that one alternative response when people ask you one of the world’s most common question – “girl or boy?” when you’re holding a baby – is to say “I don’t know. My baby will decide for itself.” This US obsession with dichotomies and labels (boy-girl, deaf-hearing, black-white) is unhealthy. Why decide for our children what they will be? I wouldn’t want someone deciding for me whether I’m a girl, boy, black, white, deaf or hearing. I’ll decide for myself, thank you 🙂

    Reply
  2. ASC June 21, 2006

    Raychelle, we definitely understand what you mean about the line regarding assigning a gender to the intersex child early on, even without surgery. We were not even sure if we wanted to include the this line or not because we do wish that society would be accepting of differences and not make parents or anyone feel they need to label an intersex child as a boy or a girl. Ambivalence is okay. After discussing it, we decided to leave the fifth point in the post because it is worth debating.

    Good point about letting children assign their own gender. Social labeling can have a very serious long-term impact and isn’t something to take lightly. Wish more people would relax about labels.

    Reply
  3. Jenn June 21, 2006

    This is interesting, I have chatted online with an “card-carrying neuter” who was intersex and autistic. He also prefers to say he’s a guy because he doesn’t feel womanly at all, but neither does he really feel like a guy.

    However, intersex does not lead to gender identity problems, it’s just that it can be hard to figure out what sex the baby is… it’s often more male than female. The surgery available tends to correct to female, which can and often will mess up the kid for life. I think letting the child tell you what the gender it is, is a much better strategy, as there is often no medical reason why any corrective surgery has to be done immediately as a baby.

    Unfortunately the argument goes the opposite way for cochlear implants, but personally I find it very hard emotionally to subject to a baby to invasive and dangerous head surgery just to correct deafness. Of course, I know deafness isn’t a life sentence of misery. It’s uninformed parents (or misinformed) parents who are easily pressured into drastic decisions by “experts.”

    So The above sentence, whoo! I agree that doctors who don’t have the actual background in psychology and deaf issues and so on should NOT be counselling parents to pay for 20,000 buck+ cochlear implant surgery under the false belief it will cure most of the problems of being deaf.

    It also does nothing to meet the parents’ immediate needs to learn how to adjust to the fact they have a deaf child.

    The secret of course, is that a deaf person with CI is still deaf. It’s an expensive hearing aid.

    So I do agree that the above sentence is valid. I do know somebody who let her daughter decide to have a CI at age 8, because she was getting ear infections all the time from her hearing aids.

    However “letting the kid decide” for CIs is going to have a lot of opponents if the child tests as profoundly deaf on all measures and has no hope of using any residual hearing effectively– so by the time the child is old enough to decide, CIs won’t work because the baby has not learned how to hear at all.

    I know some deaf people who would blame their parents for not doing that when they were babies, but maybe they themselves never felt accepted for who they were, and they reflect that when they don’t accept themselves.

    Certainly this is a decision a parent could use some expert counselling on, so they don’t second-guess what their baby might or might not feel about CIs in the future.

    Reply
  4. Brian September 30, 2006

    I realize my comment is late in coming, I apologize for this, but I just wanted to commend this blogpost.

    While reading the New York Times article on intersex babies “What if it’s (Sort of) A Boy and (Sort of) A Girl?” I sensed a connection between intersex-related surgery and cochlear implantation, but my thinking was initially vague. Thank you for highlighting this connection, and eloquently describing the similar struggles parents experience when faced with a baby who has a feature that they perceive (or are encouraged by medical practitioners to perceive) is defective and needs to be fixed. I believe that neither intersex nor deafness are defects; they are not deserving of pathologization. They are facets of humanity that endow us with beauty and diversity.

    NY Times article:
    http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html?_r=1&oref=slogin

    Great job, ACS!

    Brian

    Reply

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