What I hear you saying

Many Deaf advocates are trying to get the message out. ASL is a wonderful language. It is beautiful, expressive and complete. Deaf people don’t need anything else. Why can’t hearing parents understand this? Why can’t hearing people in general understand this? Why do they continue to discriminate against Deaf?

Before my daughter lost her hearing, my interaction with the Deaf Community consisted of a single incident. I was a college waitress, and I was trying to take an order from a group of Deaf people. We resorted to writing, as I simply couldn’t understand their speech. I didn’t think they were stupid. I didn’t give them bad service. But it was uncomfortable, and I felt bad that I couldn’t do a better job for them They didn’t come back.

Other than that, it was simply that nobody in my circle of interaction had a hearing loss, other than aging grandparents. I knew about ASL. I had no prejudice against it. It was simply a non-issue to me. Then my daughter lost her hearing to meningitis when she was a baby. All of a sudden, I had a LOT to learn. In case you were wondering, the audiology department at Children’s Hospital did and does have a Deaf advocate on staff. We met with her. All of the staff we interact with know sign language. It is SEE, not ASL, but it is a visual language. We ended up going to the Total Communication early intervention program, along with getting her implanted just after her first birthday. I feel very strongly that the sign language she learned helped her with her verbal language acquisition. They complimented each other.

So why didn’t we simply go ASL, and leave off the implants altogether? As I said at the beginning, I did hear you. I do know what you are trying to get across. I also hear other things. Here is what else I hear:
ASL deaf kids can feel isolated from their hearing families.
ASL adults have a much higher unemployment rate.
Many places, including hospitals don’t provide interpreters when they are needed. And some of the interpreters are not qualified.
Prejudice is rampant among hearing people against Deaf people.
Residential schools have a much higher incidence of sexual abuse than day schools.
Good ASL programs are hard to find in day schools.
And of course, the good old 5th grade reading level among ASL adults. Yes, I heard all about that.

Add all of that to the natural desire of hearing parents to give their child the gift of hearing, and it was a very easy decision to give our daughter an implant. And she thrived. She continues to thrive. She still signs well, and is learning ASL. She has above age level verbal language acquisition and is also above grade level in reading and writing. The only difficulties she has with her hearing, is in noisy environments, and distance hearing. The only accommodation at school is an FM system.

I know this won’t change anyone’s mind on the issue of implants. But it is important for each of us to try to understand each other’s point of view. Here is mine. What is yours?

K.L.

To Help Deaf Babies, Support Hearing Parents

Talk is cheap. Protests at oral programs empower Deaf adults but do very little to actually help Deaf babies gain access to ASL. The protests mostly cause hearing parents to want to distance themselves and their children from the Deaf activists involved. Very offputting. From my perspective as a hearing parent, I see nothing actually being done to help Deaf babies.

Many Deaf adults want to help support hearing parents, but it is conditional. It has been said that Home is where you are accepted unconditionally. To truly support hearing parents, it has to be like this. Unconditional. Telling them that the best way is ASL only, without cochlear implants, is not unconditional. This message along with the help that goes with it will be rejected by most hearing parents.

To truly reach these parents, you need to meet them at the beginning. In the early intervention programs that will lay the groundwork for the rest of these babies lives. Most parents will have already had a confirmed diagnosis of their child’s hearing loss from the newborn screening process, and the audiological appointments that followed. The audiologist will have most likely given these parents information on hearing aids, cochlear implants, and the different methodologies available. If there are any early intervention programs in the area, this information will also have been given to them. If there was a program that was available that included ASL and verbal language therapy, that information would be included. This is where true support will happen. This is where the parents need you. To be there with an option that currently is not available in most areas. To show them that their children can have the best of both worlds.

Imagine a program that could truly give Deaf babies all the options. ASL for a Deaf Identity, and involvement in the Deaf Community. Verbal speech for easier interaction in the local hearing community, and hearing extended family. A complete language toolkit for optimal success as an adult.

Will it happen? I have no idea. I hope so.

K.L.

Hearing Aids or Cochlear Implants for Deaf Children

The recent AFA story of a hearing parent opting out of a CI for her child and Dianrez’s comment on a previous blog show that the function of CIs as opposed to hearing aids is still not very well understood.

The child in AFA’s story can hear at 30 dB with hearing aids, which means she has access to spoken language (at around 30-60 dB). From an auditory perspective, this child is not deaf but hard of hearing, which means she would be able to benefit from hearing aids. By “benefit” I mean the hard of hearing child is able to access to spoken English through the use of hearing aids only. No parent would willingly put their child through surgery if that can be avoided.

In the case of a profoundly deaf child (with a dB of 90 and up), hearing aids provide access to environmental sounds. With intensive auditory and speech training, a few can lipread and use residual hearing to communicate in spoken English. Most hearing aids, even digital aids, provide some profoundly deaf children access to sounds at the 60 dB level, which is not within the range of spoken English.

With cochlear implants, profoundly deaf children can hear at the 20 dB level, which gives them access to spoken English. This is with auditory and speech training, but at a much less intensive level than with hearing aids.

For example, I had the opportunity to observe the language development of two four-year old profoundly deaf children. Both signed ASL at an age appropriate level. One wore hearing aids all the time and had auditory/speech training, and the other wore a cochlear implant and also had auditory/speech training. The hearing aid user was able to produce vowels and was able to identify some environmental noises (e.g., door bell, phone ringing). The child with a cochlear implant was almost at age appropriate level for spoken English, and was able to understand sentences in spoken English without visual cues. The difference between the children is dramatic, and only underscores the benefits that cochlear implants can provide some profoundly deaf children.

Again, to be crystal clear here, hearing aids provide a greater benefit to hard of hearing children. Cochlear implants levels the playing field for profoundly deaf children.

Revisiting AFA, DBC and Cochlear Implants

There were several topics that were brought up during the earlier blog post on this site titled Audism Free America and Cochlear Implants and follow up comments.

I'd like to revisit the main topic of that blog post, which is the inequality of assistive technology- hearing aids and cochlear implants in the deaf community. Both serve the same function, however one is much more acceptable than the other.

For CI users and parents of CI users to trust both organizations (AFA and DBC), both technology needs to be on equal footing and no bashing should be allowed anywhere by leaders and followers alike.

If CIs are mentioned as tools of audism, then hearing aids should also be mentioned as well. If hearing aids aren't tools of audism, then CI's should not be either.

The other topic is respect for parents like myself who want to protect our children. I had assumed that this was a given, that people would understand parents' need to protect their children from negative scrutiny. Perhaps this is another issue that needs to be addressed as well, as many other parents like myself of deaf children with CIs feel the same way.

To be honest, I was shocked that AFA would even suggest that their members hold rallies at elementary schools. That to me is crossing the line. Using a bullhorn next to a school is also inappropriate. I could go on and on, but there are appropriate venues for members to reach out to parents and let them know about the benefits of ASL and to teach them about audism. Taunting parents about their valid fears for their children's safety on the blogsphere is not one of them, neither is holding emotional rallies next to schools with very young children.

Audism Free America and Cochlear Implants

The discussion regarding audism, reverse audism, dysconsicous audism brings to light the issue of AFA’s position on Cochlear Implants (CIs).  

In AFA's list of demands, they ask Alexander Graham Bell Association (AGB) to help them research the effects of CIs on deaf children.  However, in their vlogs and videos of Judy Gough and Ruthie Jordan, they make it clear that they view CIs to be as evil as AGB.  

In AFA's vlogs it is also clear that data collection on the effects of CIs on deaf children is not their ultimate goal, instead they appear to view CIs as inherently dangerous to deaf children and to the deaf community.  

There are already several published books and articles on the psychological impact of CIs (see, for example, Christiansen and Leigh’s book), and educators and scholars are actively discussing how sign language benefits children with CIs (such as CIEC’s conference on sign language and CIs which is occurring this week at Gallaudet).  

CIs do not have the same effect on all deaf children, just like hearing aids, as there are so many factors that affect success rate, such as age of implantation, parental involvement, and school support. 

Now if CIs are compared with hearing aids, as they are both technology with the purpose of enhancing hearing, the issue becomes more clear.  In the past, those who wore hearing aids in the deaf community were looked down on until hearing aids became more widespread and acceptable.  The same seems to go for CIs today.  

However, in this case, many of the AFA and Deaf Bilingual Coalition (DBC) leaders themselves wear hearing aids and can hear and speak.  If we look closely at hearing aids and CIs, hearing aids are most beneficial when worn by those with residual hearing.  CIs help those who are profoundly deaf hear as well as hard of hearing people with hearing aids, or even better.  

Many of the deaf children who were implanted early can hear at 20 dB and understand speech clearly without any visual cues at all.  

Now, leaders of AFA and DBC who wear hearing aids and bash CIs- what is their motivation?  Why do they wear hearing aids at rallies and denounce CIs?  Is it to keep the status quo- the "closeted" hard of hearing members holding a place of privilege in the deaf community?