Deaf Cuer Profiles: Life with Cochlear Implants
http://www.cuedspeech.org/PDF/Winter2009_OnCue.pdf
by Zainab Alkebsi
Editor’s Note: These profiles present various perspectives among deaf Cuers with cochlear implants, including those who have had good experiences with it, those who are unhappy with their experience, and those who have just recently received at least one implant. The responses were edited for space and/or clarity.
Laura Cunningham:
Laura is a 22-year-old graduate of UMBC with a major in Psychology. She plans to attend graduate school in 2010 for special education or deaf education. She was born deaf and implanted in 1990 and 2008 [bilaterally]. In addition to Cued Speech, Laura recently started learning ASL a few years ago so she could be a part of the deaf community.
Shanna Sorrells:
Shanna grew up in Rockville, MD, and was mainstreamed throughout her education. She is currently an Education major at Smith College and graduates in December 2010. She is participating in Williams-Mystic this semester, a coastal studies program.
Nabeel Keblawi:
Nabeel was born profoundly deaf near Washington, DC, and relocated to Houston, TX, in 2008. Just a few months ago at age 29, he received a cochlear implant. He has been writing about his experiences on his blog, Nabeel's Cochlear Implant Journey.
Hilary Franklin:
Hilary grew up mainstreamed in Montgomery County Public Schools in Maryland. She graduated from the University of North Carolina at Chapel Hill with a Bachelor’s in Public Policy. She earned her Master’s in Teaching American Sign Language as a Foreign Language from Teachers College at Columbia University in New York, NY. Currently, Hilary works as a project associate at the American Institutes for Research in Washington, DC.
OnCue: How long have you been cueing?
Laura Cunningham: I’ve been cueing since 4 years old.
Shanna Sorrells: I have been cueing for about 19 years.
Nabeel Keblawi: Since I was five and a half. I’m 30 years old now.
Hilary Franklin: I learned when I was3 ½ years old, so about 28 years now.
OC: At what point in your life did you receive the CI and how long has it been since that point?
LC: I received it in October 1990 at3 ½ years old—almost 4 years old. My second implant was in May 2008 at 21 years old so, 19 years since the first and a year and a half since the second.
SS: I received the CI when I was 15, the summer before my sophomore year of high school, so it’s been almost six years now.
NK: I got my cochlear implant in my right ear on April 29, 2009, and got activated on June 1. It has been six months since I started hearing with the cochlear implant so the cochlear implant experience is still new to me.
HF: When I was 19, the summer after my freshman year of college. So it’s been 12 years.
OC: What were your initial expectations?
LC: My parents were hoping that I would be able to hear well—eventually use the telephone, etc., which did happen, due to intensive rehab (speech/listening therapy). However, with my second CI…my expectations were to try to learn how to hear with my new CI, but I did not expect to hear as well as I do with my original CI. I’ve been really lucky with the 2nd CI; it has helped so much and it’s nice to leave the original CI off...and listen with it. It’s really neat how technology has changed.
SS: My initial expectations were that it would not “cure” my hearing loss. I did not expect any miracles, but I did expect some improvement. I had done a lot of research on my own before getting the CI. I knew it would take hard work and a lot of motivation in order to get results with it.
NK: My expectations and hopes were two different things. I expected that it would be difficult to learn how to interpret sound, given the fact that I was born deaf and never built an auditory memory, especially for speech
comprehension. I was hoping that the learning curve wouldn’t be as steep as I expected. The reality at 4 months post-activation? Somewhere between my expectations and my hopes, so I’m not disappointed and I have no regrets in my decision to get the cochlear implant.
HF: My initial expectation was that I would hear as well with the implant as with the hearing aid—there was no reason to expect that I would hear or understand less. I did also have the expectation that since I had used my residual hearing so well, that there would be no initial “surprises.”
OC: What benefits do you think you’ve received from the CI?
LC: Tons! I can use the phone, I can listen to music, I can communicate with others with minimal difficulty. It’s great!
SS: I have reaped major rewards from the cochlear implant. I feel much more confident with talking to people in groups. People are able to get my attention simply by saying my name. Initially after getting the CI, people told me my speech made noticeable improvement. I can hear some songs and news on the radio; I’m still working on learning how to hear those! To sum, CI has been truly life-altering. I will never regret my decision to get the surgery.
NK: I have yet to reap the full benefits of this technology, as it is very early. What I have reaped so far is improved understanding what other people are saying, as well as being able to follow some group conversations—to a degree. I was never able to do that before. Sometimes I even overhear a few words or a phrase uttered by others close to me without reading their lips! While I’m very happy with my CI thus far…, it’s not all sunshine and roses. Learning how to comprehend speech takes work and it comes with plenty of frustration along the way. To quote my audiologist, I “started from scratch” and because of that, it will take me longer to learn to understand speech than a late-deafened cochlear implantee who already has an established auditory memory.
OC: Hilary, the previous question does not apply to you. Why did the implant not work out for you? What happened there?
HF: Well, I could write a thesis about this, but I won’t. First of all, I couldn’t really process any speech information. I was also dealing with unexpected white noise, which was pretty constant. After two months and two audiologists, we changed programming strategies, which resolved the issue. During those two months, I was frustrated with the cochlear implant center’s lack of team effort in providing appropriate auditory services for an adult with congenital severe-to-profound deafness.
I had tested my implanted ear using my hearing aid to determine whether I had lost all my residual hearing and was surprised. An audiogram confirmed only about a 5-10 dB drop since the surgery. After several months, I became extremely frustrated with the implant center, as they clearly didn’t know how to work with me. I knew that I couldn’t go the road alone, and I didn’t have the drive to battle with audiologists who were more interested in believing that they knew everything than in working/teaming with me.
So I “hung up the processor.” Almost two years later, I tried another center. While the final map was a significant improvement, something still felt “off” and eventually the processor went back into my closet. I also met one of the original developers behind the implant. He asked questions that no one else had asked. He asked about my auditory processing capabilities, etc., and suggested that my other (“better”) ear might have been better. He referred me to a research team studying why implants did not work as expected for some “excellent candidates.” I spent five days at that research center and came away with maps that were decent for environmental information, but not for speech processing. To this day, we still don’t know the exact cause(s) of why the implant did not perform as expected. I have no regrets, though.
OC: How prevalent is Cued Speech in your life now?
LC: Honestly, I rarely use it but if I am around other deaf cuers, I use it. Given that ASL is the “language” of the deaf community, that’s what I use to communicate with my deaf friends and my baby sister, who is also deaf with a cochlear implant. We occasionally use Cued Speech, but we also use ASL. If I end up working with the deaf population, I will use Cued Speech with the students that use Cued Speech as well as ASL.
SS: I still use Cued Speech at home with my parents. If I misunderstand a word they say, they cue it and we are able to get over the miscommunication quickly. I use Cued Speech with one of my hearing friends in college as well. It’s great because if I don’t know how to pronounce a word, she can cue it to me. My friends love to speak other languages: Spanish, French, Russian, Hindi, and Romanian. My friend is able to tell me what exactly they are saying. I’m learning a few words here and there! I have a sign language interpreter since my college was unable to get me a cued speech transliterator, but I really want one.
NK: Not very prevalent. I used Cued Speech primarily for educational purposes, [and] ASL when socializing. Since I [got] my CI, my need for interpreters dropped significantly, so I don’t make interpreter requests as often. Most of the interpreters I have had in the past year or two used ASL, whereas I used Cued Speech [transliterators] in graduate school between 2004 and 2006.
HF: Well, that depends on your definition of prevalent. As a certified instructor, I teach a few workshops, and I’m active on several NCSA committees. My parents both still cue, and when I’m with friends who grew up cueing, then I tend to cue with them when possible (provided no one else involved in the conversation would be left out).
http://www.cuedspeech.org/PDF/Winter2009_OnCue.pdf
