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.  


  1. I found this post through Miss Kat's Parents blog. I sighed a big sigh of relief after reading this! You've said everything my husband and I have tried to put into words for months! My son is 20 months old, profoundly deaf and has bilateral CIs. We live in South Carolina in a city where there is literally almost zero deaf community, even now from our experiences with friends that are Deag or involved with the Deaf community they scare the heck out of us. We want Malachi to have experiences with Deaf people and culture but we doubt many would accept us, his parents. Thanks for this wonderful post!

  2. I born profoundly deaf and grew up in deaf school. I respect to people who chose whatever they wanted to raise e.g. oral, CI, deaf, Deaf, hearing aids . All are humans. I don't go those "D" community because I have a great life so I stay out of militants group like AFA.
    You have great point and I love this article.

  3. Ok, first of all, I went to public school, not mainstreamed as the term didn't exist back in the 60s, my Deaf brothers and sisters goes to American School for the Deaf (ASD) in West Hartford, Connecticut. Since I was the last child, parents prefer me at home, the only reason my speech is good, is because of my residential hearing, being 65 DB. In those days, there is no interpreters in the classrooms, no support service whatsoever, except of course, a speech therapist comes once a week in elementary school, it isn't required in junior high school. The only way to survive is to possess an ability,such as animation drawing and basketball shooting, that way the hearing kids will treat me as normal. My educational levels always been above grade level in both English and Math. Would my life be different if I went to ASD, maybe but I had the freedoms to skip classes, protest the war in Vietnam, going to a deli, getting myself a Coke and a Pastrami, instead of what is being served in the cafeteria, hanging out with your best buddy, bicycling, etc. Life is going to the YMCA, camping with the Boy Scouts, Saturday mourning bowling. Life is being with your Deaf brother on weekends, going to the movies, and Deaf tournaments, playing chess, and a day at the NY World's Fair. My sister, hard of hearing, takes me out skiing with her best friend. Yes, I went to Gallaudet University, following in the footsteps of my two Deaf sisters who became teachers at both mainstreamed and institution. I like to read and write, especially on Sundays. Well, you just got a glimpse of one who is Cultural Deaf.
    Anyway, in today's world, it's all about choice, the government will try to prevent abortion, doctors will try to stop you from smoking or drinking alcohol; that vote at the ballot box may affect our nation, in the same manner that our decisions as parents may affects our children's livelihood down the road.I wasn't at the EHDI conference,do they give a balance presentation on both sides of the issues or they are lopsided. Would AFA be better off having a booth in the exhibition hall to get their point across, rather than protesting outside.Did they issue a press release to the local and national media, do they have permits secured, etc. What is EHDI responses to their concerns, any common grounds between the two camps. Is our systems somewhat biased. I often written my own viewpoints using sarcasm on these issues, our own Deaf monologue. It's understandably that parents as yourselves get turned-off with all the negative publicity surrounding AFA, same here on my side, getting turned-off reading Holism viewpoints, like the Presidential debates, we can't confrontation, that's life, what more can you expect.
    As a matter of fact, I am a parent, too; sending off my Deaf child to a mainstreamed ASL charter school, then to a state school, and finally, Model Secondary School for the Deaf (MSSD, since was born in Russia, we maintained a triculture/ trilingual household.

  4. By the way, how did you get all this information? Did you speak to the protesters? (I did, and they said the same craziness to me.)

    1. I researched. If someone is going to stomp on the grounds of my child's school, I will know who they are and what their intentions are. That's my job. It's sad really because they are so misled in their assumptions about what CI's really do and how they work.

  5. I would like to clarify something here. The Deaf community did not picket your son's school. A small, radical Deaf organization did - Audism Free America. They do not represent the entire capital D deaf community. Far from it. And to do so, is akin to saying that the Black Panthers represents the entire Black community.

    There are quite a few of us in the Deaf community who certainly didn't appreciate what AFA did during their protests. Please recognize that. Thank you.

    1. @DeafPundit:

      You are absolutely correct, and that should be clarified. There are some AMAZING Deaf individuals who have been kind and loving and open-minded to our choices as parents of D/Hoh children. These are people like the couple I mentioned in my post who helped us find our way into the Deaf community and acted as Deaf mentors for our son. These people are nothing like the AFA. Thanks for the reminder.

  6. It's not just Audism Free America that picketed, but also Deaf Bilingual Coalition members and Deafhood Foundation members. All three organizations are radicals and they supported and participated in the planning of this rally/protest. I agree with Deafpundit, they do not represent all of the culturally deaf Americans.

    Btw, I really like this post. More post like this is needed to hit home with these radical organizations with stories about how parents actually feel when being approached by deaf folks like them. They need to understand that while they do have a right to protest/rally, they need to be mindful that certain places are off limits for obvious reason.

  7. I didn't like this post. I LOVED IT! I truly believe that your experience reflects the research, reflection, informed choices, and personal journey that most parents go through when they learn that their beloved child is deaf. The point I liked best was that you said you're not "brainwashed" by A.G. Bell and the auditory-verbal-medical complex. Thank you! FYI, I'm a Deaf adult who signs ASL fluently, speaks well, and have a CI. I have the best of both worlds.

  8. Deaf Pundit is correct in saying that AFA does not represent the wider Deaf Community.

    AFA, DBC and DHF, like many in the wider Deaf community including Deaf professionals, advocate that signs be included in every deaf child's early language acquisition. These three activist groups target AGBell affiliates because of a medical orientation that neglects the positive social and cultural aspects of the Deaf community.

    Restricted methods of early language acquisition such as AVT are seen as risky and less effective than a comprehensive approach including signs.

    How to educate people about this is where the Deaf community is divided. Even people who initially supported AFA were embarrassed to read of activists visiting oral schools and a hospital.

    We need to work toward early childhood programs such as those in EHDI offering comprehensive programs to every child, rather than talking about "choices". As each child grows, the most successful communication approaches will become clearer and can be emphasized.

  9. DianRez, as usual, you continue to whitewash and minimize what AFA is all about. Have you seen AFA's 5 demands? Did you see the video of David Reynolds demanding Dr. Karl White 50-50 representation at EHDI? AFA's use inappropriate, if not illegal, tactics to promote its aims reveals them to be the extremist fringe group that they are. AFA wants all, I repeat, ALL deaf children to learn ASL and only ASL. AFA wants all oral schools to close. Parental choice doesn't matter because they are wrong anyway. You said it yourself. Anyone who reads your posts and comments knows that you're firmly in the camp with AFA, DBC, and DFH. I notice you didn't say that AFA embarrassed you.

    AFA and the Deafhood Foundation, as represented by its founder, Ella Mae Lentz, who was very visible at the protests and in AFA's own videos, make the wider Deaf community look like raving lunatics. I want no part of them. It's a shame, really, because I happen to think that deaf babies learning ASL is a great idea. And it's a shame that otherwise intelligent, well-meaning deaf people think their intimidation tactics are acceptable. Yet no one says a word to them because they're afraid of them.

    1. You are misinformed about AFA. AFA supports giving Deaf children WHOLE through ASL and English. There is no such thing as "ASL ONLY" education and I've never met anyone who wants this.

  10. I love this post!!! I'm deaf, ASL user, was in oral education then total communication education and CI user.

    Thanks, Deaf Pundist for clarify the AFA is not deaf community.

    I'm truly sorry that had happened to your son's school. I strongly agreed it is VERY WRONG to do that...

    Stay strong. There is people who are deaf and ASL users are behind your back to give you all support. I'm truly proud of you to see what your child(ren) need and give the best that meet child(ren)'s needs. Yes children's preference will change through out the childhood... I agreed that we all people have to be open-mind to meet child's need.

    I might not be a strong English writer but I just wanted to say...thank you for this post... I love it!

  11. AFA was given an opportunity by EDHI to register and join the conference as important stakeholders to help EDHI improve and understand better the various deaf-related issues in regards to early detection for hearing loss. Instead, AFA choose to protest. The opportunity was there to begin with yet choose to demonize EDHI and the people there. Boggles the mind.

    1. That's correct. I'll have to find it, but there was a letter sent to AFA inviting them to come and be a part of of the convention, welcoming them to share their views to help create balanced learning opportunities for every deaf child. The letter was disregarded.

      It's frustrating to me because, while they were protesting my son's school, they were obviously ignorant to the fact that I have taught my children sign language and that speech was just one more mode of communication they are being given. I used to be very open to my son's being a part of the Deaf community, but if this is what they'll be taught there and how they'd be represented, I will do everything in my power to keep them as far from it as possible. If their goal was to open my mind to Deaf culture for my boys, this qualifies as an epic fail. It did just the opposite.

  12. Deafpundit might felt the need to clarify that not all in the deaf cultured community (I do not use D/d to differentiate) are like them radical folks, however it is a known fact that she is going after EHDI herself. She has an agenda with EHDI and Karl White. Dianrez is always trying to whitewash things. There's damage control going on right now. I think it's too late. As a parent if someone crosses the line and it involves my child, that's it. I would not blame this mom for shielding her son from the deaf cultured community.

  13. Saw your comments on Patti Durr's blog. Your feelings are valid... Like Dawn Schriver, I apologize for AFA's tasteless, classless tactics. Luckily the majority of the deaf community does not approve of AFA's tactics. Even the ones who are very involved in Deaf Culture.

    1. Thank you, Karen. And you are absolutely correct. When we lived in TX, we were VERY involved in the local Deaf community. That's where we learned to sign. Those people didn't all agree with our choices, but they respected us and treat us as equals. They never tried to use scare tactics, mistreat my children, shame us, or use sarcasm with us. Patti uses her sarcasm as a tool to sidestep issues she doesn't have good answers for. She's snippy, but never truly answers questions with facts or examples to back her up. Eventually, that method is going to fail her. In fact, it already has. With the exception of being known as a radical, it seems very few people respect her opinions and methods. Even others who support the AFA have said her tactics are wrong.

      It's sad really because all her behavior and that of others like her is doing is creating hostility and giving parents a reason to turn around and run the other directions. Professionals and law makers won't take someone seriously who behaves in such a childish and radical behavior. Every time they act that way, they set their own cause back several years. They lose the trust of those they seek to change. Without trust, there can be no promise of the changes they're looking for.

      We feel very blessed to know so many deaf people who act respectfully and with grace toward the hearing world.