Tuesday, March 6, 2012
The Deaf vs. deaf Debate Comes to a Head
There was an EHDI (Early Hearing Detection and Intervention) conference in our area recently. It was picketed by the Deaf community. A few days later, an oral school in the area was picketed by these same people. Today, Liam's school was picketed. I don't care who you are or what your agenda is. Picketing a school where children are is the WRONG way to get your point across. That said, let me share my thoughts on a few things. Not all of my readers will agree with me. That's what the comment section is for. Feel free to use it. (Please note that I moderate all comments and will not permit profanity, threats, name calling, or other similar offenses. Keep it PG please.)
The people picketing claimed to not be against the parents who chose to give their children oral education, but instead the system that brainwashed us all. I think I'd rather have you picket me as a parent than insinuate that I'm so stupid and ignorant that I could be hoodwinked by oralist specialists. Byron and I made our decisions for our boys after a great deal of research, thought, consideration, and full understanding of the implications of our actions. Not that I'm asking to be harassed by a bunch of people who don't even know my life or my choices, but I do want to be clear that I was by no means brainwashed. I maintained control of my mind and actions the entire time I was making decisions on behalf of my children.
To clarify, the people protesting these oral school are members of the Deaf community. For those who are unfamiliar, Deaf with a capital D is suggestive of living within and embracing the Deaf culture, community, and language. With the growing popularity of cochlear implants and vast improvements in hearing aid technology, the Deaf community is shrinking. This is understandably of great concern to Deaf people who wish to preserve their culture and language. I get that. I still don't see how picketing a school full of young children is going to help preserve the culture, but whatever. That's another blog post, isn't it?
Most all of my readers know our story, but let me just summarize for those who are just catching up. CJ was our first child to be born with hearing loss. We were devastated, but did our research. We decided that total communication was the best choice for him. We got him hearing aids, taught him sign language, and did everything we could to communicate in every way possible with him. We wanted him to choose for himself what he wanted. His hearing grew progressively worse, and he'd bring us his aids and tell us they were broken. Well, they weren't broken. His hearing was too far gone to benefit from hearing aids anymore. He cried and cried because he wanted more sound. That was what decided it for us. Eight days after he turned three, we implanted him for the first time. While we maintained his sign language, he wanted to speak. He was so desperate to find his voice and tell us all the amazing fantastical things that were happening in his little head. He now has perfect speech and is fully mainstreamed. He can tell us what he thinks, feels, or needs without the assistance of an interpreter. He doesn't need another person to speak for him because he can do it for himself. He knows he's deaf. He knows that, without his processors, he needs sign language and lip reading to express himself or understand others. That will never change. It's a piece of who he is. We aren't ashamed of that or trying to change that. We're merely trying to give him every opportunity possible. Is there really any shame in that??
With Liam, we did things almost exactly the same way. We started out with sign language and hearing aids. We gave him all the input we could find for him, and let him guide us. Liam was actually more interested in signing, but was still trying to speak. It's just been harder for him. Since his implant, he has finally begun to find his voice and speak. He can tell us what he wants or needs. He still falls back on sign language and I'm fine with that. Admittedly, he is the only child at his school who signs, but it's an oral school so that isn't at all surprising to us.
There are a few things that the Deaf community (as I understand it) wants to address. The first is that we should understand that our children are Deaf and are therefore part of their culture, which should include sign language. Physiology does NOT define culture. It is a piece of who a person is, but it doesn't define them. 9 out of 10 deaf children are born to two hearing parents. The language those parents speak in the home is what helps define a child's culture, not his physical ability to hear. My husband grew up in a Spanish speaking home because his mother is from South America. That is his culture, although he obviously also spoke the English his father was raised with. Just as Deaf parents want their children to know and understand sign language, hearing parents want their deaf children to understand their language. It's not a matter of parents being too lazy to learn to sign or not wanting to or whatever the excuse may be. It's a matter of a natural born desire for a parent to share his or her own language with the child s/he brought into the world and loves so deeply.
Some of the protesters argue that the cochlear implant companies should give half of their earnings to the Deaf community. Why??? Those monies are going toward improving the quality of hearing devices that will potentially give recipients opportunities they could never have without some mode of hearing. Opportunities for Deaf individuals to excel in their communities means more and more people learning about who the Deaf are and what their talents are. While these picketers are worrying about all they stand to lose, they're missing the boat on all that they stand to gain.
It's an interesting situation to me. If my child had been born visually impaired and I'd chosen eye glasses or surgery, that would be considered fine. If my child were born with a heart defect and I had it surgically repaired, that would be fine too. If my child were born with only one leg, and I got her a prosthetic limb and taught her to walk, that would also be acceptable. My child happened to be born with hearing loss. I, after a great deal of learning and time and consideration and prayer, chose to implant them. I am now virtually the devil in the eyes of some in the Deaf community.
Help me understand this. From what I've observed, Deaf individuals are dependent on interpreters to be their voice and ears in medical situations, legal circumstances, and even in their education. They have to hope that the interpreter is adequately skilled and can do more than finger spell. Most of the time, interpreters are VERY skilled at what they do and that is a blessing. Sometimes, though, that's not the case. I'm not okay with my children being at the mercy of someone else to communicate for them. If there is a way around that, I want to give it to them.
Often, those who only sign rather than speak are incredibly limited in their employment opportunities. Statistically speaking, they have a lower success rate with school and a significantly decreased percentage of Deaf children vs. oral children go on to higher levels of learning. Typically (though not always) their reading and writing levels are also decreased. It's not that I think these are bad things. It's just that I want more for my boys if I can give it to them. I want them to have every opportunity out there for them in this world.
I'll be honest about one more thing. As a parent who was trying desperately to find the right answers for my children, it was very hard to even get into the Deaf community. We had one pair of friends who were Deaf and have a hearing daughter CJ's age. They were wonderful to us and sort of helped guide us through what we were doing. They helped us get into the Deaf community in our area and make friends for CJ. We wanted him to have Deaf adult mentors.
The overall feeling from the Deaf community as a whole was that implanting children was barbaric, cruel, damaging to their brains, forcing them into something they weren't meant for, etc. As parents we sometimes wanted to turn and run from that as fast as we could. Who wants to be told that helping their child the best way they know how is barbaric? Here's a hint: if you want people to listen to you and change the way they see things, try approaching it a bit more mildly than, say, picketing at their children's school.
It's so interesting to me because I have yet to see one single parent of an oral child picketing a Deaf school. I don't see oralist parents forcing hearing aids and cochlear implants onto Deaf children. Why is that? Why is okay for Deaf individuals to treat oralists this way, but not the other way around? We are people. We have feelings. We LOVE OUR CHILDREN and most of us go to the ends of the earth trying our damndest to do the right thing for these beloved little people that have been entrusted to us. Before you protest outside our children's schools, put yourselves in our shoes. THINK!
Here's what it comes down to:
1. Byron and I are the parents here. We have made our choices on behalf of our children and we pray to God every day that it was the right choice. For us and our family, this is what works. We have no regrets and would do it again. Every ounce of blood, sweat, and tears that has gone into raising these boys to all that they can be has been worth it.
2. While I don't expect everyone to agree with our choices, I do hope they'll respect them. At the very least, consider the Golden Rule and do unto others as you would have done unto you.
3. Parents who choose oralism or total communication for their children are no more barbaric than a parent who chooses one religion over another.
There is so much more I could say about this, but it would be beating a dead horse and would probably fall on deaf ears (pun intended). I'll leave at this for now.