November 3, 2010

Number One Birth Defect in America

I went to a workshop recently about working with deaf and hard of hearing children. It was an awesome workshop and I learned a lot. However, I was startled by something I read during a slide show presentation. In giant words across a screen, it read:

"Hearing loss is the number one birth defect in America."

Birth defect?!

I have to admit, it kind of stung. I don't know why the word birth defect affected me so. Maybe because I have never seen anyone use this term to describe someone with a hearing loss before. Perhaps it was because I was the only one in the workshop possibly born with this defect. Maybe it was seeing it in giant bold letters screaming at me. I suddenly felt the need to hide my hearing aid. I think I blushed a little.

I am fine with the terms disability and impairment. I don't use the term hearing impaired because I feel it is outdated, like using the word negro to describe a person of African descent. However, I do not get offended by others who use it and I could really care less if they use it.

But, apparently I do not like the word defect. For some reason, the word defect reminds me of grossly exaggerated 'mutants' or 'freaks' that you see in horror movies. But really, defect means a fault, a short coming, or an imperfection. And it is true, you could say that someone born with a hearing loss or some sensory deprivation is born with a defect. They are not perfect or typical, meaning they do not have 100% hearing. So defect is an appropriate term. But, I just did not like it for some reason.

I know that in recent posts I argued that one should use any term to describe oneself or others who have hearing losses or are deaf. One should be able to use terms such as hearing impaired, deafness, deaf, Deaf, hard of hearing, hearing loss, disability, sensory loss, etc. But, be mindful of how you use these terms and who you use them with. If the person is offended by the term hearing impaired, use another term. It couldn't hurt to be a little more sensitive to other people's feelings. If you like to use the term birth defect and don't see it as a problem, fine. But, don't use it with me (that is after I tell you that I am offended by that term).

I don't know why this particular word irks me. It just does.

I suppose I can understand why some people may be offended by certain terms used to describe them, such as hearing impaired and disabled. Everyone will react differently to certain words for different reasons, I suppose.

BUT, it does not mean that if you encounter someone using a term you don't like, you can attack them or yell at them in anger or accuse them of being mean and insensitive without giving them good reasons why. Unless the person continues to use the term with you or directly at you after you told them that you don't like the term or that the term hurts your feelings.

The medical and professional community can sometimes be impersonal with all of the medical terms and jargon they use. With words like defect, impairment, diagnosis, exams, audiological, and disease, it is hard to want to form a close and warm relationship with anyone repeatedly using these terms to describe you or whatever "defect" afflicts you.

But, the medical aspect is necessary. I need my hearing evaluated and explained by an audiologist to better understand my hearing loss. But, it is always nice when the doctor or audiologist talks with me and asks questions about me and not just talk about my hearing loss. Doctors, ask how I am doing or how I feel. I don't expect to have long in depth conversations. Just make my visit with you more personable, please. It would be nice if you could tell me about support groups or communities I can join or learn about such as HLAA, DeafRead, ALDA, and such. It is always better to talk about these things with people who are experiencing the same things you are. People with typical hearing will never understand. They can do all the research in the world and work with deaf and hard of hearing people for several years, but they will never fully understand.

So, a term struck a nerve in me. It surprises me that I was offended by it. But, I now somewhat understand where others are coming from when they tell me that they don't like it when I use certain terms such as deafness. But, I am still going to use this term in my blog, unless I am directly talking with someone who hates the term.



  1. It seems that terminology such as this is based on its fundraising potential. Without labels such as "hearing impaired" or "birth defect" it would be more difficult to attract grants for schools, services and devices.

    But alas, it emphasizes the unfortunate aspect and further reinforces the defect aspect to the community. Then we have to fight our way back to be considered as normal and able people. How different it would be if all these conditions were merely considered variants and accommodations just a natural part of everything?

  2. How many deaf people go to these workshop?

  3. I agree about how to use the terms on other people.

  4. Had it been "Blindness is the number one birth defect in America" you wouldn't feel as slighted as you did with that hearing loss fact? Or perhaps you wouldn't feel slighted if it was used in the context on the malformation of clef palate? Missing or stunted limbs? Everything else is ok except it shouldn't be applied to hearing loss?

    I see "birth defect" as something that went wrong while in the womb. Just as the German measles created a variety of birth defects in babies from hearing loss, blindness, mental retardation, defects of the limbs, and so on.


  5. Yeah, I know birth defect applies to not just hearing loss. I am not saying it is wrong to use it. I have not seen birth defect in a while. Up until now, I have been constantly surrounded by terms such as "people born with....", you know "People first" terms.

    Mike said,

    "Everything else is ok except it shouldn't be applied to hearing loss?"

    Whoa, that is not what I am saying here. Did not mean to imply that!

    I just didn't like the word. It was strange. I never have been affected by words before. I honestly can't say why the word hurt me. It just did. I understand now where some people are coming from if they say a certain term or word being used to describe them hurt them.


  6. Hey, if a blind person feel birth defect offends her (she probably wasn't even born blind anyway), I wouldn't use the term on her either.

  7. Right, Anonymous, that is what I am trying to get at here. I am only saying that I now have a better understanding why some people would get hurt by harmless words used all of the time at least to most people.


  8. Mike said,

    "Blindness is the number one birth defect in America" you wouldn't feel as slighted as you did with that hearing loss fact? Or perhaps you wouldn't feel slighted if it was used in the context on the malformation of clef palate? Missing or stunted limbs?"

    Of course not, because these do not apply to me. Maybe if I was born with a missing limb, I would not feel the same about the term. I have no idea. Who knows? I think I know what you are trying to say here, Mike. I wish I could explain why it bothered me. Maybe I'll get over it. I think it has a lot to do with not being exposed to the term "birth defect" as much.


  9. Anonymous,

    I don't think many deaf people go to the workshops I go to. This workshop was for educators working with children with cochlear implants.


  10. well if any loss in one of the 5 senses is considered a defect. mobility and ability is also measured in defects.

    hearing sense is what brings people together and deafness separates people. that is why blindness is not considered a social defect. deafness is a social defect.

    these are the two scientific observations by majority of scholars.

  11. All a sudden, I feel so unattractive.

  12. when did the word 'defect' became associated with personality ?

    For me, I have no issues with 'defect' even if I am totally deaf. Defect means exactly just that. "Defect Hearing" == "Issues with hearing". Nowhere it referred to my personality.

    I bet people would think differently if the "defect something" had a bigger impact on everyday life. Being deaf/hh typically has no impact for most. But as one with low vision, yes defect is a problem and should be called like that, defect vision.

  13. I have been called with so many names, and now I feel so defective lately.

    I like your blog post, by the way.

    Amy Cohen Efron

  14. I think it is more of what people's idea of perfection. And since we are sexual being, I don't think anyone want people to see us as "defective" (especially socially defective and ESPECIALLY what happened to deaf people in history) I think people like me would rather have the word deaf or HOH. This goes with many people who like to have their label separated from other labels so they be unique and appreicated.

    I have heard of people say deaf is a birth defect before. March of Dime is one of it.

  15. Thanks for stopping by Amy! :)

  16. Let me ask you all this: What would be another way of saying "Hearing loss is the number one birth defect"?


  17. I wouldn't use it at all.. for what purpose? I just show the estimate statistic of how many babies were born deaf (they must have a reason think it is the number one, and that is statistics)

  18. How about:

    "Hearing loss is the number one birth concern."

    I think that's why some deaf people resent others' labeling of us when we are capable of labeling ourselves.

    Some people don't care about labels; some people are attached to them. Others take offense at them.

    I think I would feel something if I were in an audience where people called me "a defect."

    My son's audiologist told me, "Your son has a moderate hearing loss. He can function in the hearing world." I remember this moment as if it happened yesterday. She was suggesting that I couldn't function in the hearing world with my type of hearing loss and my inability to speak. How ridiculous especially since I have a college degree.

    Yet, there are many many people who believe that. And those are perpetuated by such labels as the one you saw in your workshop.

    I wouldn't feel defective because I am not.

    Wonderful thoughts; I appreciate your sharing them.

  19. It shouldn't be necessary to emphasize "defect" at all. Instead of accepting any defect-based description for whatever reason, we should just state personal descriptions. The word "deaf" or "blind" could carry the same weight as "brunette" or "Jewish" or "middle-aged".

    Maybe once this is accepted in our social consciousness, the disability aspect and all its pity connotations and urgency to fix it before all else will disappear.

  20. Well, I do think that you can thank the March of Dimes for popularizing the term "birth defects".

    Birth defects are congenital (not genetic), typically arising from a disease contracted by the mother-to-be carrying a fetus or a disorder that is passed to the fetus by the mother. Rh factor and rubella were common disorders/diseases that caused birth defects in babies in the '50's to the '70's, for example. This is, of course, the medical view and the term "birth defects" is a lump-all term that many charities use to describe a whole array of disabilities or, ah, rather "personal characteristics?", arising from maternal-fetal diseases/ disorders in order to draw funding.

    Funnily enough, the term reflects on the medical community. Why the campaign on birth defects when the medical community could have done more to inform women planning their families about such dangers like Rh factor or rubella and the like beforehand? Beats me.


  21. Funny how a simple word can stop you in your tracks, isn't it??

    Defect does have a negative connotation taken by itself. What is the actual statistic on babies born with hearing loss? I forget? One in a thousand?? It's interesting. I would have guessed cleft palate was far more common.

  22. Jan Parlin PacelliNovember 04, 2010 7:11 AM

    I wasn't born with a hearing loss, but developed it in early childhood, as far as my family is aware. I never like the sound of Hard of Hearing - reminds me of being hard up for something. But my loss is not anything close to being what people popularly think of as deaf/Deaf. And Hearing Impaired - blech. So I will say I wear 2 hearing aids or if I'm talking / signing with a Deaf person (I'm not a good signer) I will do the HH sign just because I don't want them to think I'm claiming an identity not legitimately mine.

  23. Hi (e,
    I know what you mean about those words "birth defect". When I was pregnant with my son, the doctor asked if anyone in my family had birth defects. I was really taken aback because you see my father has a cleft palate. I had never thought of him as someone with a "birth defect" - it was just the way he was. I was surprised by my own reaction to those words.

  24. What surprised me more than anything here is that hearing loss is the nbr 1 birth defect? Is this really true?


  25. Not sure if it is the #1, but according to this, it is one of the common:

  26. I agree, and for some reason that terminology really strikes a nerve with me also. Nobody wants to be described as "defective". How about I claim that the number one birth defect in China is being born with smaller eyelids? The number one birth defect in Africa is being born with very dark skin? It's offensive, period.

  27. Thing is, it's not even true. See frequencies of common "birth defects" at:

    But that "number one birth defect" rhetoric continues at places like:

    Not sure what the lesson is about that punch in the gut of being perceived defective when one FEELS whole, except to say be sure to check for FACTS before believing what people tell you about YOU being defective at all... Also good to consider motivations of the gatekeepers to funding to help us overcome our defectiveness.

    If we are still defective after the March of Dimes and Let Them Hear collect up all that money, can we at least get 'em to cut us in on the largess?


    - Linda

  28. Hello E,

    I remember you when I was a child. I went to WSD during the times you were there. You would be one of the staff in my iep meeting. to tell you who I am I am lady who is in wheelchair and who is hoh. at that time you worked at wsd I was only person that deal with hardship of lack of acessable on wsd campus til I was in 5 grade they finally remodel the elemtary school. They had me cut the ribbon which that was awsome experince anyways maybe you would remember who i am. oh by the way I liked what you said about birth defect how you dont like that term I dont like either what i really dont like is Handicapped. Disabled or Abily differently is better word terms.

    Lisa Lynch

    aka Lisa Rose

    Lisa Lynch
    aka know as Lisa Rose

  29. Hello Lisa,

    I have never worked at WSD. That must have been someone else. Sorry. I hope she was a nice person. :)

    It must have been frustrating to deal with the lack of accessibility during part of your time there. But it must have been really cool to be part of the ribbon cutting ceremony!

    I don't like the term handicapped either.

  30. I think there's a systemic problem in our society to feel that 'defect' = 'bad'. There just isn't any word for defect that doesn't have some of those connotations, unfortunately. You can see the same thing in the transsexual community. Transsexualism is caused by a congenital birth defect where the mother's body misreads the fetus's chromosomes and releases a mismatched set of hormones during the latter part of the pregnancy. The 'how' of it is actually fairly straightforward and unbiased; yet sometimes transsexuals get offended by the term 'birth defect' because of all the negative connotations.

  31. I would prefer they call them 'congenital disabilities' rather than 'birth defects'. Especially with deafness, because 'birth defect' I associate with something visibly structurally malformed (either external or internal), which isn't necessarily the case with deafness - some deaf people have ears and auditory nerves and such that look normal, even though they don't work normally.


Keep it civil.