Wednesday, August 1, 2012

because some people need to be educated

**disclaimer: this post is in no way meant to offend anyone or is aimed at anyone in particular, but something that is directed more a society as a whole and something I need to get off my chest, so to speak**

This whole this started with a video going around on facebook of an 8 month old baby hearing his mother's voice for the first time, via a cochlear implant. The thousands of comments on this video were all to the effect of ,"oh how wonderful!" and "this made me cry!". I went to the facebook page where this particular link was shared from, curious to see if anyone else had a different reaction to this video. And someone did have a much different reaction, and then all mayhem broke loose (not really, but it felt like it at times).

In the deaf community, cochlear implants can be quite controversial. At what age are you forcing a child to have it vs them choosing it. By giving them the implant what is the hope? That they will be a 'normal' child, they can hear therefore there life will be better than if they were deaf? Will you use sign language with them at all? Or will you think a CI is enough for them to communicate verbally and no sign language is needed. The debate goes on and on. In the hearing world, CIs are seen as an amazing technological advance to help deaf children not be disabled anymore, end of story.

To understand part of this argument you must realize that CIs are implanted into a child's skull and can be incredibly invasive. They also do not miraculously make a child hearing. In some cases, when children receive an implant at an early age as they grow they decide they do not want to use it anymore.  There are also adjustments that constantly need to be made, as well as hard work with speech therapists, batteries that can be very expensive as well. CIs are not a quick, permanent, or all encompassing solution to being deaf.

Now this whole situation stemmed from the video posted on facebook, but the later events where in no way related to it. So as I looked on the facebook page that shared the video for any adverse reactions to the video, I found it. (Paraphrasing the comment) "Why do parents give a child so young an implant, i think they should wait until age 4 or 5, it seems like the parents are not accepting that their child is deaf". The comments that followed were nothing short of rude and borderline ignorant and demeaning. Most people were 'outraged' that he would suggest waiting 5 years, why would you make you child disable if you did not have to? Another quipped that the first years of life are the most important for language development, and delaying a CI would impair the child. The quote that literally made me tremble from being so mad, insinuated that the mentality the women had was uninformed and such a thinking was probably indicative of a person who also refused to vaccinate her children. I do not get angry or upset about very many things, but this is something that made (and is still making me) have a flurry of emotions. The ignorance of all these people was so frustrating to read, and really opened my eyes to the ill educated world that we live in. I had to post something in defense of the real problem, the view that deafness must be fixed for a child to have language and have a good life. I was so riled up I fear my comment may have come off as offensive, but it was so hard to contain myself. I added that deaf is not a disability, and that young children learning ASL is a wonderful and beautiful thing, and that CI are not always the best option. These people just didn't get that! The next commenter called me rude, and said if I have nothing nice to say, I shouldn't have said anything at all (where was her almighty judgement when the others were attacking the women who started this post.) If you want to see the full post go to Brio Birth's facebook page and scroll down to Nicola Lumpkin's post.

The posting got worse from there, there were some well meaning people and one friend of mine who commented and gave a wonderful perspective. I tried to figure out why this was all making me so mad. I have of course seen people being rude to each other on facebook before, but perhaps it was never such a personal topic as this. I realize now that my anger is directed at a two-fold problem: 1.) hearing people with the opinion that hearing is superior to being deaf (so why wouldn't you choose for your child to be hearing if you could?) 2.) and the general lack of knowledge about early language development and how wonderful and beneficial ASL can be (this relates to this first problem in the fact that speaking with one's voice is superior to signing). There was a time recently when I did not think such a point of view still existed about the deaf, today I was shown to be wrong. Here is a very poignant example, straight from my own experiences. Someone I barely knew asked if Leo was hearing or deaf, I told her casually that he was hearing (I am so used to the question, I understand the curiosity factor involved), and then the woman gave me a high-five complete with an "Oh great!" comment. I was so shocked I did not know what to say (definitely not a reaction I have ever received before). I wondered later what would have happened if Leo was deaf, would that same woman have given me a hug and told me she was sorry? I realize now that the majority of the people that have never had any exposure to deaf people would probably have the same reaction. It makes me mad (yes I really do feel mad about this) that people would think this way! There is so much more I could put into this post (obviously I guess i'm a little passionate about this), but I will end this now by saying this: assuming someone has a lesser or impaired quality of life because they are not the same as you, because they are 'lacking' in something which you believe to be vital to who you are and how you live your life, is the saddest and most infuriating thing I have ever encountered. Because some people need to be educated.

5 comments:

  1. Hey Michelle. Thank you so much for your post. My daughter is hard of hearing and I get people asking me all the time if she is deaf. It bothers me because for the first couple of weeks of her life we were lead to believe she was. It was hard, but we knew that sign-language was a wonderful alternative and that she would be a happy healthy child regardless. Honestly we were planning on teaching her to sign even before we found out she is hard of hearing.
    I think it is human nature to fear the unknown, and to worry about how our child, or our friend's child will fare in a predominantly hearing world, but invasive surgery to "fix" them is not always the answer. Its a decision that can't be made lightly and will affect the child for the rest of their life.
    So yes, I believe you are right. Too often disabilities are seen as problems that need to be fixed, rather than unique circumstances that make an individual unique.

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    1. I completely agree, and though I focused on the mindset hearing people have towards deaf people, it can be applied to any persons that are different that what is thought to be ideal and has a 'disability'. I love your comment that these are 'unique circumstances that make an individual unique' well said!

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  2. Something I did not add to this was that so many hearing parents with deaf children do not get the proper information/seek out the information they need to make the right decision. Many of the first people parents meet with are audiologists and doctors who do not advocate the use of sign language, and in some cases discourage it greatly. I think that parents who receive all the information, from both sides, are the ones best equipped to make such decisions. But the majority of the time, not all the facts and information is presented.

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  3. I saw you post this from FB and had to come read. I've been interested in ASL since an early age and I have no idea where it came from (makes me think I'll be using it a lot one day). After taking 3 years of ASL (which you can't tell now since I forgot it all), I learned so much about the deaf community. My husband had no idea about the controversy over CI's, so I educated him and now he understands. What bothers me is that those that get CI's are usually banned/looked down upon in the deaf community. It makes my heart break because everyone has a different circumstance. My ASL teacher got one after her 2nd child was born because she just wanted to hear her children's voices. And because of that, she wasn't welcome in the deaf community where she lived because they thought she was now seeing deaf people as "disabled." It was devastating. Anyway, I just wanted to say that I agree with you completely. I feel like people need to be educated on this subject and it bugs me to hear about that woman that was so relieved when Leo wasn't deaf.

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  4. I know CI's are a topic most hearing people never think about, I'm so glad someone learned a little something from my post! As for the deaf community looking down on those who chose to have an implant, I think it depends on the people/person, some people are extremely proud to be Deaf, and when they see someone choosing to be hearing, they feel that person has turned their back on who they really are. There is a term called 'audism' that basically list racism or sexism but towards deaf people. So when 'one of there own" becomes 'hearing' it can cause backlash and tension. As for my personal experience, I know both adults and children with CI's, but most all of them sign and are involved and accepted into the deaf community. I am not against CI's, I just think a family needs to be fully educated before giving them to children, there is so much to consider. You should start using your ASL skills again, you never know when you will need it!

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