Friday, March 2, 2012

Who Owns The Deaf Child?

At some point in my first couple of years at Flagler College, a question was posed to my class: "Who owns the deaf child?". I felt it was a thought provoking question, but even as I sit here 9 years later, I still do not think I can fully appreciate how much a part of our work as deaf educators that question is.
While I was in college majoring in Deaf Education/Elementary Education, it was easy to get caught up in your course work to a point where everything seemed as if it fit into a nice little box with a bow on it. Everything had it's place, and if it didn't, then I was confident at the time that the answers would come to me as I continued on with my education or my work experience. Well, with time came answers, but none of the answers ever came clean. The topic just doesn't lend itself to the black and white. So now, as I sit here with about 11 years of studying deaf education, I'd like to revisit the topic and invite conversation. So, let's take a look at all of the players in this discussion: Parents/Guardians, Medical Community, Schools/Government/ Deaf Community.
Parents/Guardians:
Many would argue that raising a child is one of the most rewarding experiences that a human being can go through. Whether or not a child was a part of the parents plan, the arrival of a child, more often than not, is met with great anticipation. When a child is born and a parent learns that their child is born with a hearing loss, the reaction often isn't rooted in their extensive knowledge of hearing loss. There is no appreciation of the "Deaf" culture. There is not an overwhelming sense of joy that their child has been born without the ability to hear. So as a result, it is logical to view their child simply as DISabled. I mean, it stands to reason that when your child is born in a hospital, you are going to be viewing the hearing loss from the perspective that almost everyone in the hospital views it...medically. Let's be realistic here; the majority of deaf children are not born into homes where the parents are fluent signers. These children are driven home by parents who cannot communicate with their child in their own native language. I've heard that the percentage of hearing parents who have deaf children is somewhere around 80%. I'm sure that isn't the exact number, but that seems to be the average.
Let's think about that for a minute here...the VAST majority of hearing parents who are raising a deaf child do not know how to properly communicate with their child. Questions like, "Why does my stomach hurt?", "Why is the sky blue?", "Who are you?", and "Is there a God?" will have the same answer, ".......................................". Pretty amazing isn't it? I mean, really---how is it that every single deaf child who is unable to communicate with their parents, not on some kind of behavior altering medication? Let's say you were putting your hearing child on a bus to go to their first day of school. Let's make a checklist of things your child will need: Backpack? check. pencil, paper, crayons? check. Lunch money? check.  Child knowing that you are his/her parent? nope. Child knows where you work? nope. Child could tell you where he/she lives? nope. and finally, Child knowing his/her own name? NOPE. Now, would you put your hearing child on a bus if your checklist looked like this? I don't know about you, but the majority of hearing parents of hearing kids that I know barely make it through their child's first day of school without losing it. I cannot imagine what they would be like if their checklist looked like the one we just made. Unfortunately, that is the case with the vast majority of the deaf kids who are entering our school system. I have come across several schools where students who are in that same situation are pushing teachers to their limits. One of the first things I hear is that they believe the child is autistic, ADD, or ADHD. When really, the child has just never been given an explanation. Meaning, the child is operating off of a "yes" or "no" system in the home. Let me explain. If you have a hearing child and a deaf child in the home of a hearing parent. If both kids reach their hands onto a hot stove, the parent will pull them both away. The hearing child will hear, "No!". The deaf child, if the parent knows the sign for "no" will see "no". The hearing child will likely say, "Why?" and the parent will reply, "Because you will hurt yourself!" The child will reply, "Why?" Parent, "Because the stove is hot!" Child- "Why will hot hurt?" Parent-"Because hot metal will burn your skin, almost like a fire.". The deaf child, after being told no, will stand there, and possibly make a move for the stove again in a few minutes. The parent, not knowing how to communicate has to resort to some form of punishment in hopes to communicate to the child that what they are doing is dangerous and they ought not to do it. What sort of ideas is the deaf child left to come up with if an explanation is never given? Is eating too much candy dangerous? Well, i'm sure that a dentist might say so, but most parents would not. Parents, likely would just tell their hearing child that too much candy could give them an upset stomach, ruin their appetite, or rot their teeth. But without an explanation, how is a child supposed to know what is dangerous, and what is just a bad idea?
This home environment is producing a child without well defined boundaries. The child will be entering the classroom without much of the learned social behaviors that most hearing children acquire at home. This leaves the school, and more specifically, the teacher with a educational task far greater than the results of any standardized test. So, with all this in mind, do the vast majority of  Parents/Guardians "own" the deaf child? Are they the most qualified individuals in the child's life to make decisions for him/her?


Medical Community:
For those of you who have been through the experience of being in the delivery room when your child is born, would you say that it's a pretty intense atmosphere? As I mentioned earlier, I have yet to go through that, but I've seen enough episodes of the "Young and the Restless" and "I Didn't Know I Was Pregnant" to know that the delivery of a child is a pretty crazy experience. Let's create an imaginary scenario that involves part your experience, and part fiction. So you are back in the delivery room. You are in the middle of a very lengthy delivery and the stress is building. Finally, after a lifetime of anticipation, your flesh and blood child is born. You have just created a living creature. Perfect in every way. Later, you speak with the doctor only to learn that your child was born deaf. What do you know about deaf people? You may have seen some famous deaf people on tv every now and them. You probably have seen interpreters on stage during important events. You sometimes see people signing around town, but that really is the extent of it. So what comes out of the doctors mouth next is taken as fact. Why wouldn't it be? A doctor is a paid professional! Medical school takes forever to finish...doesn't it? Spending that much time in college must make someone smart. Well, they are smart. I'm not saying they aren't, but they are doctors. And as such, they are approaching your child strictly with a perspective that is rooted in years of medical experience. Just a thought...do you think that these same doctors, who are talking to you about what is medically going on with your child, have been involved with the education of a deaf child before? Have they ever sat down with people who are deaf and had a conversation about what it is like to grow up in a world without sound? Have they heard stories from deaf people about the culture that bonds deaf people together? Have they compiled the most recent research on sign language and the development of the brain? I could go on and on, but the bottom line is that the vast majority of "experts" on hearing impairments in hospitals have little to no perspective on the lives that deaf people lead beyond how their ears function.

State/Government:

NO. They don't own them. Well, if they do have to have a role in this, I suppose I would just call them an absentee parent. Not involved near enough to really grasp what is needed to provide these kids with fair and equal access to the curriculum and society that the government has made the laws for. 

Deaf Community:

Ok, this is going to be a tough one, considering, i'm not Deaf myself. Whenever I used to think about what a great teacher I was becoming at FSDB, I just would sit down and think of deaf babies. I would think about how when many deaf kids are born, they enter this world without any real exchange of language with their parents or anyone for that matter. Whenever I come across a Deaf kid in one of my districts who is around 5 or so, and has no language whatsoever, I immediately start wondering....WHAT ON EARTH IS THIS KID THINKING ABOUT??? I mean, really!?!? What is food? What is a car? WHY AM I AT THIS PLACE???(school) WHO ARE THESE PEOPLE AROUND ME??? WHO ARE THESE PEOPLE HUGGING ME AT HOME???...then I remember oh...that's right. They don't actually have these voices in their heads. So...what ON EARTH ARE THEY THINKING??? So that is the point when I look myself in the mirror and say, "Well, you thought you knew something about Deaf kids, but guess what...you really don't." So at that point, I turn to the Deaf adult. The people who have experienced those same feelings of cluelessness (not a word, I checked, but it's cool. It's cool) because they were not given language at an early age. The cluelessness that exists because they were left to figure out a world on their own because no one could explain any of it to them. So then when we finally get to them, and can start plugging language into their brains, we are trying to place ideas into a brain where ideas have been formed and relied on for as long as they have been alive. Really an odd concept when you spend time thinking about it.
So, with that I say, "Deaf community, you know more than I ever will." Does everyone in the Deaf community want what is best for the deaf kid? Well, I guess that depends on what "best" means. Some in the Deaf community believe that ASL is the only path a child without hearing should take to language acquisition. So, as many in the Deaf community believe theirs is a culture, not a disability, ASL is at the heart of the culture. Language, after all, is one of the key elements to any culture.
But if a child has the ability to hear...even if it's just a bit, is it wrong to encourage speech development for the sake of holding on to your cultural identity? Will everyone in the Deaf community shun those who use their voice and rely on their hearing for some areas in life?...no. Will some...?...sure.

Conclusion:

So...parents, doctors, politicians, and members of the deaf community; is there a clear winner here? Well, you would think that with so many people/groups involved in making the lives of deaf children better that the deaf child would be the winner. Unfortunately, that is not the case. Because their is no clear consensus as to who truly owns the rights to raising the deaf child, and because the real right way to raising a deaf child is not exclusive to one particular practice, but maybe it's pieces of each approach. Pieces that could come together to create a wonderful future for a child. Pieces that could only come together, if everyone involved with those pieces would come together as well.

4 comments:

  1. I have a child with hearing loss and to be honest we must be an exception to the rule because once we found out we began seeking out learning more ASL. It wasn't an option for us in our minds even though our daughter has hearing. (She has microtia in one ear.) We got a lot of information from the doctors and audiologists who told us not to pursue sign and we did anyway. I was blessed to have Deaf ASL instructors and get my daughter into the Deaf culture and community in spite of being a hearing family which was important for us. We don't use ASL near as much as we should but our daughter is learning both to speak and sign. She's favoring sign which is fine with us... not so fine for relative but it is fine with us and we're happy to be able to communicate with our daughter. Due to the resources here we are actually going to homeschool.

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    1. I would have to say you are the exception to the rule as far as my experiences go. Your story gives educators of the Deaf goosebumps!

      Thanks so much for sharing,

      Brian

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  2. I honestly think for things to change it has to start in the medical field. Newborn hearing screenings aren't mandatory in our state but that is how we found out about our daughter who is 16mo now because our hospital did that. Obviously she failed... several times, and we were refered to Children's ENT clinic who confirmed she had hearing loss.
    The problem we would have faced, like most hearing parents of deaf children, is the lack of resources a parent is given. We were given their opinion of how to go about educating our daughter. We weren't given any resources on programs because according to them she should be able to speak 'normal'. When we were asked we were told about a birth to 3 program. We did talk to them but the options were limited and it was either an oral education or another program but the program only had the Shared Reading Project which is a good program but we knew it wouldn't be enough. That is when I went to the Deaf community. I knew of a Deaf church and asked to speak to someone who could read lips. I didn't get very far as they refered me to the program that I had already checked out. So I enrolled in the local community college (the teachers at the college go to this particular church) and began. It was there that they realized that I wanted my daughter to be able to function in BOTH cultures. That church has stepped in and is welcoming our family into the Deaf culture and basically being a mentor. In fact, they are going to be training me to interpret ASL. However, not all parents go to the extreme of fighting for their children for several reasons. I just never accept what I am told.
    Many parents are like me and they do what they are told by doctors because they think doctors know what is best. However, what audiologist or ENT actually gets involved with the Deaf culture? None that I have met so far. The don't give out all the information available of options you can try and only give out what they want to give you based on their opinion without getting a balanced view. Parents don't know how to get involved in the Deaf culture and parents are caught in a jumble of opinions.
    One thing that will really bless your students as well as the Deaf culture I think will be this...
    Seek out someone in the Deaf culture and start a program where Deaf individuals can come in as volunteers and provide the mentorship. They need to be balanced in their views obviously as there are a lot of options but ask them to help. Ask them for their opinions and what helped them the most. Have times where parents can meet with these volunteers to talk about what was a struggle and what wasn't as they grew up in a hearing household. Deaf kids don't have a lot of role models or mentors and being hearing you simply can't fully understand what your students are going through whereas a Deaf person can and give you insight. Don't just listen to them but work on trying the things they are suggesting out. Its amazing to me that schools tend to carry a huge responsibility and they don't consult the Deaf community to make programs more effective for the Deaf and try what they are saying.
    I just found a state report on Deaf and Hard of Hearing Education in my state's public schools and knowing what I know now I am not handing my child over to a school that doesn't know what they're doing. I am probably doing as much if not more than our school district can provide for my Deaf child which is a lot to say when we also homeschool our autism spectrum son after being told by 6 different teachers of 3 different districts that he will eventually fall through the cracks in spite of special education services. I am willing to go to whatever length necessary to reach to where they are and help them achieve their dream. They will know that they don't have to do it alone and I am going to be their advocate, partner, teacher, friend, and any other thing I need to be to get there.

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