CI Teen: My Struggle With Social Life
When I was little, I was confused with my own identity as my parents took me to St. Joseph Institute for the Deaf for oralism program and I never understood why American Sign Language is such a forbidden language. I remember the kindergarten very well and I stayed there for about two years after I first enrolled there when I was about six or seven. Then I advanced to second grade leaving few classmates behind because I finally was able to write sentence on my own while the rest of the class still depend on houseparents to help them write sentence in notebook everyday for homework, which we are suppose to write something what happen or what did we do all day for “diary”. When I was in third grade, I was able to excel so well with classworks and homeworks and advanced to 4th grade, leaving almost all of my classmates in third grade to repeat. I didn’t understand this until I came to possibilities why this happen to my classmates. I often ask myself today, “Did they have hard time understanding teacher by using lipreading and talking?” or “Were they not being attentive to the teacher as they are tired of using oral method?” I really don’t know.
However, I remember I found a video tape cassette with my name on the label on it. I was curious to see what’s in it. I looked and discovered myself that I blew up at teacher as I threw stuffs at her especially game board. I was shocked and I didn’t remember except I remember this school before St. Joseph Institute for the Deaf. I don’t remember which school but I’ll ask my mom about it later, perhap ask her to write her experience when she find out about me becoming deaf or her decision to send me to school. Anyway, I remember my frustration with my teacher when I really didn’t HEAR ANYTHING with my hearing aids so I decided to play with switches. It actually went on and I actually hear something. Then teacher saw me and scolded me, forcecd me to turned off. I was dumbfounded and didn’t understand why teacher do that until I was older enough to suspect that they are trying to prove that hearing aids don’t work on me so I can become best candidate for Cochlear Implant. It was the time I still haven’t developed a language and I only knew very few signs which I completely forgotten during SJI time. So it never happened for me to get cochlear implant in that school. I wonder about that.
I was the second person who has Cochlear Implant in my classroom and I got it on January 1990. When I use it for a while, I hated it from the beginning because it was giving me headache too often. I usually lose patient and became more frustrating while any of my family members pressure me to wear CI all the time, just exactly like staffs at SJI did. I feel prisoned. It only increase my frustration and I lose temper easily because I didn’t understand.
During my time at SJI, I was excellent student there except for the fact that I have uncontrollable temper tantrum which I recalled the principal tearing Certificate of Merit in front of my classmates because of me losing temper tantrum during recess time. Sometimes I’ll lose temper in classroom where teacher forced me to go to principal’s office which I was punished to stay in her office ALL DAY until really late evening like 7:00 p.m. or 8:00 p.m. When I asked principal that I need to go to bathroom, I was denied. Until later, it was 5th grade that I became C average student because I lost motivation in school. Of course, I was told that I was best at lip-reading and talking, but I don’t mean best of all classmates in school. However, I was suspended from school twice due to temper tantrum and I know it was miscommunication with my staffs but I will not go into details of what’s exactly happen because I didn’t understand why staffs were giving me hard time. I really didn’t get along well with dormitory staffs except two of my favorite staffs.
When I was suspended, Mom had to send me to Turner Middle School where they have deaf classroom. It was first time I met deaf classmates who used ASL and I remember my Mom was pressuring two hearing teachers who teach the deaf classroom with American Sign Language that she didnt want them to teach me ASL. Of course, I was stubborn to learn ASL because I was told by some staffs that “ASL make deaf people look stupid” or “Once you learn ASL, you’ll never use lipreading and talking again.” Of course, I thought it was true. That’s when I decided not to be friend with any of those deaf classmates who use ASL and they made fun of me a lot. After Turner Middle School, I wanted to go back to SJI and it was my last chance to be good. I never get the chance to know those deaf classmates with ASL skills because I was ignorant audist.
However, I didn’t last long there and there was misunderstanding. I was told by staff to wait in living room before lining up for dinner. I waited there very long time until different staff came to me and told me that they already left to dinner. I was confused and went there. I ended up with punishment that I have to do dishes. I was hesitant and willing to clean up the table after dinner. Later, I found out that dormitory supervisor had to tell me news that they no longer accept me living in dorm because I was reported losing temper, which I knew I cannot afford to lose one, that I never did lose temper. Of course, I was with my step-Dad Doug (I call him “Dad”) and I was crying hard because I’m leaving my friends there behind and the possibilities that I might never see them again.
As I left SJI, I never knew what’s ahead of me but I realized today that it was best thing ever happened to me. Mom wanted what’s best for me by sending me to Evangel Academy (Middle and High School) but the principal there had guts to tell my mom that there is no way they can accept deaf student like me. I actually had to see my mom crying so hard as if there is no hope for me. I thought with my lipreading and talking would help me great deal to go through hearing school so I asked Mom, “Why not I go to my friend’s school?” It was childhood hearing friend who live two houses away from my house. I enrolled in Youree Drive Middle School and became straight A’s student in order to prove Evangel school that they’re wrong to doubt my academic intelligence. At first, adminstirators put me in English class which is not regular or advanced, but rather class for students who have hard time learning because they thought it is common that ALL deaf children are poor in English and other subjects, which of course, is not entirely true. When teacher was astonished with my English skills, the administrators transfered me to advanced classes and I continued to be straight A’s student.
I was so successful in education but what I am missing is social life. I thought I would be able to interact with hearing students just like SJI teachers told me that oralism will succeed me. Don’t forget that I was told that I was best lip-reader and able to talk very well except I struggle with making “ch” sound or confused with “e” and “i” (other similar sound like “m” and “n” by listening, you get an idea what I meant). I tried to talk with hearing students as normal as possible but we always ended up having pen and notebook, writing back and forth. It was frustrating. I was able to make only few friends and I tried to make more friends but they don’t seem interest in having conversation with me via pen and notebook. I didn’t understand because I understand deaf students, hearing teachers and staffs at SJI. I came to realization that it really depend on people’s lip movements and it takes really longer time between me and others to understand each other because I have to study their lip movements and they have to know my usual talk. It’s exhausting work. I became more isolated by focusing in education more than social life. Why is that? Because staffs at SJI always kept telling me education is the most important tool in my life. I realized that it’s not true because you need to balance education and social life. From lacking my social experiences, I run into several conflicts that I had trouble manage to solve myself. With my history of temper tantrum, I had faced the possibilities that I may end up in juvenile jail because I could not control my temper tantrum.
My relationship with my family is very limited because I spend most of my life living in dormitory because my family and I ran into several arguments, miscommunications, or misunderstandings. I was frustrating and sometimes I blame my mom for putting me through so much. I grew very distant from my family except I am very close to my brothers because we chat a lot than with my parents. I sometimes come to my step-Dad for solutions to my problems and we usually talk a lot, but sometimes we ended up using pen and notebook.
I was desperate to improve my social skills and I tried to have hearing friends come over my house, but eventually they stopped coming to my house. When my mom bought a computer and connected it to AOL, I became hooked to AIM and chatrooms because they were my only way to keep in touch with friends. I would look for deaf people that I could make friends and we chat a lot all night. It became my “telephone”. I decided that I respect my family as they use phone during day so I would use internet all night. But that became a problem because my mom and ex-husband Tim (he’s an audistic jerk who tried to ban me from using TTY, Flashing Phone Alert devices, etc) believed that internet is hazardous to my life. We fought in argument. But that is long story and thankfully, Tim is gone since he was caught having affair with other woman.
I remember participate in science program provided for disabled and deaf people (yes, they consider “deaf” as “disability” in their persepctive) and I met a deaf friend Cody who know ASL. One time, for a special event from science program, we went to bowling and I saw difference between my family and Cody’s family. My mom and I were quiet most of the time because she usally start conversation by asking me what I need such as clothes, food, etc as I never knew so well about her personal life, and I watched Cody being so chatty in sign language with her parents. That hit me hard because I am missing social life. Cody’s parents are hearing and they encouraged me to learn ASL by leaving me a business card to Deaf Action Center where they provide ASL classes. I was hesitant about taking ASL courses but when one morning came, my education specialist told me that there is a law requiring me to have interpreter so that’s when I decided to go try learn ASL. It took me less than six months to pass ASL courses and the staffs who worked there are incredibly wonderful people. I never forget them. My girlfriend Becky asked me if I remember my very first sign and I don’t remember it because I was “brainwashed” to forget signs that I learned before SJI. However, when I learn about ASL and meeting some hearing parents who has deaf children, it felt wonderful to be free and I realized that sign language actually help me express my feelings more easier than using oralism because I had trouble finding right words of how I feel. I never regret learning ASL.
From 8th grade to Freshman in Captain Shreve High School, I was given an awesome interpreter named Will and he is so fantastic in ASL. He would tell me stories about his experiences with his interpreting job and he told me that he was frustrating with teachers at Turner School because they are not good at signing. That’s when I learned that it had become problems in deaf education and why some deaf children are two grades behind. Even he blew up at one of teachers because she tried to make up a sign for deaf children and he told her that she cannot do that by adding new sign to ASL if she is hearing. Anyway, I was only deaf student in Captain Shreve High School and it was tough year for me because of my social life.
It took me a lot of thinking and I told my mom that I wanted to go to deaf school that allowed ASL. She didn’t want me to go and we ended up in argument. I ran away from home few times when I was teenager. It was rough time. My Dad, Doug, came to me and he wanted to understand me. I admitted to him that I was having hard time making hearing friends even I still have few loyal hearing friends, even today I still visit them and they’re still my great friends. Dad decided to look for a deaf school and we thought there are only three deaf schools in America. They are SJI, Central Institute for the Deaf, and Louisiana School for the Deaf. Boy, we were wrong and there are over hundreds of deaf schools across United States of America.
That’s when I enrolled in Model Secondary School for the Deaf and made a lot of friends there. I choose MSSD because that’s what my Dad wanted me to go rather than Louisiana School for the Deaf. There are a lot of problems in LSD especially both education and social. However, I still struggles with my social life because after three years of lacking social life, I developed anti-social characteristics and I still fight it today. I prefer living in deaf world because I do not face communication barrier there. But I am grateful that I went there.
I left MSSD at the end of my sophomore for my personal reason and mental health. Mom wanted me to return to Captain Shreve High School and I didn’t want to. I told her I want to go to Huntington High School because that’s where I heard there is deaf program there and it is good place for me to go there to make deaf friends. Also, it’s an ideal because it give me second chance to make hearing friends as well. Mom doesn’t want me to go there because that school is too far and I really didn’t care how far it is. We had school distrcit problems and I was forced to go to Captain Shreve High School. It only bring painful memories of me trying to make friends there. I remember Dad was yelling at me that Hungtington is a black school and tried to scare me from going by telling me stereotypes of black students being gangsters. Of course, I didn’t listen because I’m tired of hearing people looking down on deaf people, I’m tired of white people looking down on black people. I really don’t care about STATUS. Then that’s when Mom and I had a huge argument and Tim (ex-husband) grabbed my arm and pulled me out of house into backyard where he was yelling too fast that I don’t understand him. I told him to stop several times until I realized he is really out of control. I knew Mom was inside the house so I screamed Mom in hoping that she would rescue me. She never did. It was first time I felt betrayed from her. I escaped from the home and ran to my neighbor, asking him to drive me to Dad’s. I told Dad what happened and I was broken down in depressed. Then I learned that Tim is accusing me of stealing his huge bottle of vodka, which I didn’t. I didn’t return home for three weeks because Mom didn’t beleive in my innocence as I was crying and depressed as if no one in my family is helping me except my Dad. (This is another long story but I think I already mentioned it in my other post. If not, I’ll post about it later.)
Anyway, I finally transfered from Captain Shreve to Huntington High. I was surprised to see very same old deaf friends I met at Turner School. Huntington High is next to Turner School. And we became very good friends and I actually was impressed that they are doing so well in socializing. And remember Dad’s stereotypes? It turned out to be false because I was very impressed to see black students dressing so well as if they’re lawyers. (Huntington is law magnet). And they are really friendly! Not what I imagined from what Dad had told me. I knew it is wrong to tell people of stereotypes because you don’t know them. Ironically, I noticed big differences between hearing students at HHS and at CSHS is that HHS friends are friendly and willing to make friends while CSHS students are little bit snobby and stick in cliques. It helped my social life a little better. But I stayed there for one year until I decided to return to MSSD for my senior because my senior is important to my life and it is my last chance to make the best out of my social life as possible. Unfortunately, I never went to Prom because I couldn’t find a date so that didn’t bother me. I even asked Becky to go out with me as a friend but MSSD cannot allow Gallaudetian to enter prom, which sucked. I did attend to Homecoming dance twice, my sophomore year and my senior.
And I am attending at Gallaudet University where I am much happier with my social life more than in hearing world. It doesnt mean I’ll stay out of hearing world forever because I am still part of it. My mom finally learn some signs and fingerspelling and I am happy for that because we became more closer than ever. We still talk but when I miss words she said, she would fingerspell for me. It had helped decrease my frustration. And even for MSSD, it helped me a lot to deal with my temper tantrum because I am able to learn my mistakes and flaws from my friends. MSSD changed my life dramatically. After thinking about my life at SJI, it only made me more angry and frustrating and I often thought thiis question myself “Did this oralism method fuel my anger more because it is very exhausting and frustrating work?”
This is my life as ex-oralist and ex-CI user. I am more happy with who I am. I sometimes felt betrayed from this oralism method because it failed my social life. And I wonder same thing for other oralists who struggled the same thing. But this doesn’t mean it apply to all oralists. Only few are successful. And sometimes I felt that oralism banning ASL can harm deaf education and I can see that it caused so much division within deaf community.
This is why we need unity in deaf community and this is exactly why I support John Egbert’s Deaf Bilingual Coalition. I am really looking forward to see this coalition to succeed.
Aaron
When I was little, I was confused with my own identity as my parents took me to St. Joseph Institute for the Deaf for oralism program and I never understood why American Sign Language is such a forbidden language. I remember the kindergarten very well and I stayed there for about two years after I first enrolled there when I was about six or seven. Then I advanced to second grade leaving few classmates behind because I finally was able to write sentence on my own while the rest of the class still depend on houseparents to help them write sentence in notebook everyday for homework, which we are suppose to write something what happen or what did we do all day for “diary”. When I was in third grade, I was able to excel so well with classworks and homeworks and advanced to 4th grade, leaving almost all of my classmates in third grade to repeat. I didn’t understand this until I came to possibilities why this happen to my classmates. I often ask myself today, “Did they have hard time understanding teacher by using lipreading and talking?” or “Were they not being attentive to the teacher as they are tired of using oral method?” I really don’t know.
However, I remember I found a video tape cassette with my name on the label on it. I was curious to see what’s in it. I looked and discovered myself that I blew up at teacher as I threw stuffs at her especially game board. I was shocked and I didn’t remember except I remember this school before St. Joseph Institute for the Deaf. I don’t remember which school but I’ll ask my mom about it later, perhap ask her to write her experience when she find out about me becoming deaf or her decision to send me to school. Anyway, I remember my frustration with my teacher when I really didn’t HEAR ANYTHING with my hearing aids so I decided to play with switches. It actually went on and I actually hear something. Then teacher saw me and scolded me, forcecd me to turned off. I was dumbfounded and didn’t understand why teacher do that until I was older enough to suspect that they are trying to prove that hearing aids don’t work on me so I can become best candidate for Cochlear Implant. It was the time I still haven’t developed a language and I only knew very few signs which I completely forgotten during SJI time. So it never happened for me to get cochlear implant in that school. I wonder about that.
I was the second person who has Cochlear Implant in my classroom and I got it on January 1990. When I use it for a while, I hated it from the beginning because it was giving me headache too often. I usually lose patient and became more frustrating while any of my family members pressure me to wear CI all the time, just exactly like staffs at SJI did. I feel prisoned. It only increase my frustration and I lose temper easily because I didn’t understand.
During my time at SJI, I was excellent student there except for the fact that I have uncontrollable temper tantrum which I recalled the principal tearing Certificate of Merit in front of my classmates because of me losing temper tantrum during recess time. Sometimes I’ll lose temper in classroom where teacher forced me to go to principal’s office which I was punished to stay in her office ALL DAY until really late evening like 7:00 p.m. or 8:00 p.m. When I asked principal that I need to go to bathroom, I was denied. Until later, it was 5th grade that I became C average student because I lost motivation in school. Of course, I was told that I was best at lip-reading and talking, but I don’t mean best of all classmates in school. However, I was suspended from school twice due to temper tantrum and I know it was miscommunication with my staffs but I will not go into details of what’s exactly happen because I didn’t understand why staffs were giving me hard time. I really didn’t get along well with dormitory staffs except two of my favorite staffs.
When I was suspended, Mom had to send me to Turner Middle School where they have deaf classroom. It was first time I met deaf classmates who used ASL and I remember my Mom was pressuring two hearing teachers who teach the deaf classroom with American Sign Language that she didnt want them to teach me ASL. Of course, I was stubborn to learn ASL because I was told by some staffs that “ASL make deaf people look stupid” or “Once you learn ASL, you’ll never use lipreading and talking again.” Of course, I thought it was true. That’s when I decided not to be friend with any of those deaf classmates who use ASL and they made fun of me a lot. After Turner Middle School, I wanted to go back to SJI and it was my last chance to be good. I never get the chance to know those deaf classmates with ASL skills because I was ignorant audist.
However, I didn’t last long there and there was misunderstanding. I was told by staff to wait in living room before lining up for dinner. I waited there very long time until different staff came to me and told me that they already left to dinner. I was confused and went there. I ended up with punishment that I have to do dishes. I was hesitant and willing to clean up the table after dinner. Later, I found out that dormitory supervisor had to tell me news that they no longer accept me living in dorm because I was reported losing temper, which I knew I cannot afford to lose one, that I never did lose temper. Of course, I was with my step-Dad Doug (I call him “Dad”) and I was crying hard because I’m leaving my friends there behind and the possibilities that I might never see them again.
As I left SJI, I never knew what’s ahead of me but I realized today that it was best thing ever happened to me. Mom wanted what’s best for me by sending me to Evangel Academy (Middle and High School) but the principal there had guts to tell my mom that there is no way they can accept deaf student like me. I actually had to see my mom crying so hard as if there is no hope for me. I thought with my lipreading and talking would help me great deal to go through hearing school so I asked Mom, “Why not I go to my friend’s school?” It was childhood hearing friend who live two houses away from my house. I enrolled in Youree Drive Middle School and became straight A’s student in order to prove Evangel school that they’re wrong to doubt my academic intelligence. At first, adminstirators put me in English class which is not regular or advanced, but rather class for students who have hard time learning because they thought it is common that ALL deaf children are poor in English and other subjects, which of course, is not entirely true. When teacher was astonished with my English skills, the administrators transfered me to advanced classes and I continued to be straight A’s student.
I was so successful in education but what I am missing is social life. I thought I would be able to interact with hearing students just like SJI teachers told me that oralism will succeed me. Don’t forget that I was told that I was best lip-reader and able to talk very well except I struggle with making “ch” sound or confused with “e” and “i” (other similar sound like “m” and “n” by listening, you get an idea what I meant). I tried to talk with hearing students as normal as possible but we always ended up having pen and notebook, writing back and forth. It was frustrating. I was able to make only few friends and I tried to make more friends but they don’t seem interest in having conversation with me via pen and notebook. I didn’t understand because I understand deaf students, hearing teachers and staffs at SJI. I came to realization that it really depend on people’s lip movements and it takes really longer time between me and others to understand each other because I have to study their lip movements and they have to know my usual talk. It’s exhausting work. I became more isolated by focusing in education more than social life. Why is that? Because staffs at SJI always kept telling me education is the most important tool in my life. I realized that it’s not true because you need to balance education and social life. From lacking my social experiences, I run into several conflicts that I had trouble manage to solve myself. With my history of temper tantrum, I had faced the possibilities that I may end up in juvenile jail because I could not control my temper tantrum.
My relationship with my family is very limited because I spend most of my life living in dormitory because my family and I ran into several arguments, miscommunications, or misunderstandings. I was frustrating and sometimes I blame my mom for putting me through so much. I grew very distant from my family except I am very close to my brothers because we chat a lot than with my parents. I sometimes come to my step-Dad for solutions to my problems and we usually talk a lot, but sometimes we ended up using pen and notebook.
I was desperate to improve my social skills and I tried to have hearing friends come over my house, but eventually they stopped coming to my house. When my mom bought a computer and connected it to AOL, I became hooked to AIM and chatrooms because they were my only way to keep in touch with friends. I would look for deaf people that I could make friends and we chat a lot all night. It became my “telephone”. I decided that I respect my family as they use phone during day so I would use internet all night. But that became a problem because my mom and ex-husband Tim (he’s an audistic jerk who tried to ban me from using TTY, Flashing Phone Alert devices, etc) believed that internet is hazardous to my life. We fought in argument. But that is long story and thankfully, Tim is gone since he was caught having affair with other woman.
I remember participate in science program provided for disabled and deaf people (yes, they consider “deaf” as “disability” in their persepctive) and I met a deaf friend Cody who know ASL. One time, for a special event from science program, we went to bowling and I saw difference between my family and Cody’s family. My mom and I were quiet most of the time because she usally start conversation by asking me what I need such as clothes, food, etc as I never knew so well about her personal life, and I watched Cody being so chatty in sign language with her parents. That hit me hard because I am missing social life. Cody’s parents are hearing and they encouraged me to learn ASL by leaving me a business card to Deaf Action Center where they provide ASL classes. I was hesitant about taking ASL courses but when one morning came, my education specialist told me that there is a law requiring me to have interpreter so that’s when I decided to go try learn ASL. It took me less than six months to pass ASL courses and the staffs who worked there are incredibly wonderful people. I never forget them. My girlfriend Becky asked me if I remember my very first sign and I don’t remember it because I was “brainwashed” to forget signs that I learned before SJI. However, when I learn about ASL and meeting some hearing parents who has deaf children, it felt wonderful to be free and I realized that sign language actually help me express my feelings more easier than using oralism because I had trouble finding right words of how I feel. I never regret learning ASL.
From 8th grade to Freshman in Captain Shreve High School, I was given an awesome interpreter named Will and he is so fantastic in ASL. He would tell me stories about his experiences with his interpreting job and he told me that he was frustrating with teachers at Turner School because they are not good at signing. That’s when I learned that it had become problems in deaf education and why some deaf children are two grades behind. Even he blew up at one of teachers because she tried to make up a sign for deaf children and he told her that she cannot do that by adding new sign to ASL if she is hearing. Anyway, I was only deaf student in Captain Shreve High School and it was tough year for me because of my social life.
It took me a lot of thinking and I told my mom that I wanted to go to deaf school that allowed ASL. She didn’t want me to go and we ended up in argument. I ran away from home few times when I was teenager. It was rough time. My Dad, Doug, came to me and he wanted to understand me. I admitted to him that I was having hard time making hearing friends even I still have few loyal hearing friends, even today I still visit them and they’re still my great friends. Dad decided to look for a deaf school and we thought there are only three deaf schools in America. They are SJI, Central Institute for the Deaf, and Louisiana School for the Deaf. Boy, we were wrong and there are over hundreds of deaf schools across United States of America.
That’s when I enrolled in Model Secondary School for the Deaf and made a lot of friends there. I choose MSSD because that’s what my Dad wanted me to go rather than Louisiana School for the Deaf. There are a lot of problems in LSD especially both education and social. However, I still struggles with my social life because after three years of lacking social life, I developed anti-social characteristics and I still fight it today. I prefer living in deaf world because I do not face communication barrier there. But I am grateful that I went there.
I left MSSD at the end of my sophomore for my personal reason and mental health. Mom wanted me to return to Captain Shreve High School and I didn’t want to. I told her I want to go to Huntington High School because that’s where I heard there is deaf program there and it is good place for me to go there to make deaf friends. Also, it’s an ideal because it give me second chance to make hearing friends as well. Mom doesn’t want me to go there because that school is too far and I really didn’t care how far it is. We had school distrcit problems and I was forced to go to Captain Shreve High School. It only bring painful memories of me trying to make friends there. I remember Dad was yelling at me that Hungtington is a black school and tried to scare me from going by telling me stereotypes of black students being gangsters. Of course, I didn’t listen because I’m tired of hearing people looking down on deaf people, I’m tired of white people looking down on black people. I really don’t care about STATUS. Then that’s when Mom and I had a huge argument and Tim (ex-husband) grabbed my arm and pulled me out of house into backyard where he was yelling too fast that I don’t understand him. I told him to stop several times until I realized he is really out of control. I knew Mom was inside the house so I screamed Mom in hoping that she would rescue me. She never did. It was first time I felt betrayed from her. I escaped from the home and ran to my neighbor, asking him to drive me to Dad’s. I told Dad what happened and I was broken down in depressed. Then I learned that Tim is accusing me of stealing his huge bottle of vodka, which I didn’t. I didn’t return home for three weeks because Mom didn’t beleive in my innocence as I was crying and depressed as if no one in my family is helping me except my Dad. (This is another long story but I think I already mentioned it in my other post. If not, I’ll post about it later.)
Anyway, I finally transfered from Captain Shreve to Huntington High. I was surprised to see very same old deaf friends I met at Turner School. Huntington High is next to Turner School. And we became very good friends and I actually was impressed that they are doing so well in socializing. And remember Dad’s stereotypes? It turned out to be false because I was very impressed to see black students dressing so well as if they’re lawyers. (Huntington is law magnet). And they are really friendly! Not what I imagined from what Dad had told me. I knew it is wrong to tell people of stereotypes because you don’t know them. Ironically, I noticed big differences between hearing students at HHS and at CSHS is that HHS friends are friendly and willing to make friends while CSHS students are little bit snobby and stick in cliques. It helped my social life a little better. But I stayed there for one year until I decided to return to MSSD for my senior because my senior is important to my life and it is my last chance to make the best out of my social life as possible. Unfortunately, I never went to Prom because I couldn’t find a date so that didn’t bother me. I even asked Becky to go out with me as a friend but MSSD cannot allow Gallaudetian to enter prom, which sucked. I did attend to Homecoming dance twice, my sophomore year and my senior.
And I am attending at Gallaudet University where I am much happier with my social life more than in hearing world. It doesnt mean I’ll stay out of hearing world forever because I am still part of it. My mom finally learn some signs and fingerspelling and I am happy for that because we became more closer than ever. We still talk but when I miss words she said, she would fingerspell for me. It had helped decrease my frustration. And even for MSSD, it helped me a lot to deal with my temper tantrum because I am able to learn my mistakes and flaws from my friends. MSSD changed my life dramatically. After thinking about my life at SJI, it only made me more angry and frustrating and I often thought thiis question myself “Did this oralism method fuel my anger more because it is very exhausting and frustrating work?”
This is my life as ex-oralist and ex-CI user. I am more happy with who I am. I sometimes felt betrayed from this oralism method because it failed my social life. And I wonder same thing for other oralists who struggled the same thing. But this doesn’t mean it apply to all oralists. Only few are successful. And sometimes I felt that oralism banning ASL can harm deaf education and I can see that it caused so much division within deaf community.
This is why we need unity in deaf community and this is exactly why I support John Egbert’s Deaf Bilingual Coalition. I am really looking forward to see this coalition to succeed.
Aaron
January 17th, 2008 at 12:18 pm
Mizhka, is this from an anonymous person? It looks like it’s you telling your personal story but it sure doesn’t sound like you. Just wanted to be clear on this….
January 17th, 2008 at 12:19 pm
Oh, no, that’s not me as I don’t have a c.i.. Thank you for pointing it out as I didn’t realize his name wasn’t on the bottom of the story.
January 17th, 2008 at 12:33 pm
I am proud of you, Aaron for standing up for your beliefs! We are in the same boat! Keep it up! Congrats! =)
January 17th, 2008 at 12:48 pm
Oh my goodness sake, that prinicipal had no right to denied you for needing to go to the bathroom! Go sue that STOOOPID non sense principal! Oh gosh, you made me feel goose bumps all over my body! I am so PROUD of you to stand up your own right by supporting the need of unity Deaf community and John Egbert’s Deaf Bilingual Coalition! Congrats!
January 17th, 2008 at 12:51 pm
Aaron, I appreciate you sharing your story.
The medical-centered establishments (drs, oralism, ci manufacturers, etc) need to stop sweeping dirts under the rug, and start acknowledging the others who didn’t succeed with CI and/or oralism.
January 17th, 2008 at 12:54 pm
Same old story from many ex-oral students! I was one of them.
January 17th, 2008 at 12:54 pm
CIs do not typically cause headaches. Did you report this to your CI surgeon? Perhaps your map was not good enough and headaches were the result of struggling to listen. Or, simply caused by hormones of adolescence.
I don’t know how old you were when you received it, so I don’t know, but young children find the sounds just fine, whereas older people do not always enjoy hearing, so that may be part of what was going on.
Anyway, my point is that the little ones who receive CIs do not experience any more headaches than anyone else. Or migraines. And, when they receive them early and wear then continually, they do not feel frustrated with understanding and communicating. So it would be very different than a person implanted at, say, ages 6 or 10. Optimal results occur when a child is implanted before 3 because the “window” of opportunity for best usage closes between 3 and 7 years of age.
Kids today who are implanted young will not develop appropriate communication if they are taught “bilingually” by hearing parent. Perhaps they will achieve it with deaf parents, but hearing parents are inadequate to not use sign language fluently and will therefore stunt the growth of their kids if they use primarily sign. Having seen kids who use a bit of sign and speech as well, I can say that they don’t develop as quickly as the implanted kids who are specifically focusing on auditory skills.
My kids would never imagine going around without their CIs any more than a signing adult would close their eyes while walking around. It doesn’t make sense to them. They like to hear, they’re used to hearing, and they fully utilize that sense. I’m sorry that you are so angry about your childhood, and it sounds like there were difficulties, but your experience doesn’t effectively negate the thousands of kids who are functioning absolutely fine in the mainstream, listening and talking with their CIs. Personally, I’m not necessarily an advocate of oral schools because I really prefer the mainstream for kids who are implanted early. It provides ordinary spoken language role models, for one thing.
I hope you are happy where you are, and that you can be at peace with yourself and your family as well as the rest of the world. No doubt your parents were trying to do their best at the time, given the information that they had, and to forgive them for what you feel are failures is a great virtue.
January 17th, 2008 at 1:05 pm
Acutally, Susanna, there are other c.i.s who ended stopping wearing their c.i.s due to headaches or other side effects, quite a lot. I don’t know why you haven’t heard about them, but they are out there.
January 17th, 2008 at 1:07 pm
Aaron’s story has the unmistakable ring of truth.
I recognized the emotions caused by lack of meaningful, sharing communication with teachers and administrators in the oral community, from experience in mainstream schools.
However, child rearing and communication with children has changed a great deal since the early 50’s when the rod was not spared to avoid spoiling the child. I was shocked to hear that this still went on as recently as fifteen years ago, if Aaron is of college age now.
There is no excuse to treat a child as an object, and a bright child who is competent in written English is able to handle frustration by communicating IF HE IS ALLOWED.
I wondered about the videotape. This requires prior planning and set-up, and the teacher making it must have known ahead of time how to stage events so that the child would blow up. If the teacher knew this would happen, she would also know how to to avoid the child’s emotional triggers and achieve a successful outcome. Such manipulation for videotaping is unethical and harmful.
Fortunately, it is possible to leave this unhappy experience behind as one grows to maturity and experiences success and learns confidence. The tragedy is that it is unnecessary to go through this in the first place and leaves memories difficult to overcome.
January 17th, 2008 at 1:13 pm
I believe that there are some people who perceived that they had headaches caused by CIs, but in my dealings with thousands of parents, you can’t find one whose early implanted kid said that they had a headache any more than the general population. It is not true that CIs actually create headaches. However, straining to see or hear anything can cause fatigue and therefore, headaches. If a map is not correct, a person could feasibly have a headache caused by straining to hear or from struggling to understand people in a crowded/dark room. This is the same thing that deaf individuals (those not implanted) report when trying to understand conversation at a crowded dinner gathering, etc. It’s simply not easy and causes a strain. This would not be “caused” by their lack of hearing as much as straining to hear. See what I’m saying.
Again, medically, correctly mapped cochlear implants do not cause headaches.
January 17th, 2008 at 1:20 pm
hey aaron
rememeber me from sji ?? I don’t like sji and I love asl and easier for me english and asl like bilngual I love it I hope u doing good in gally u still in gally no long time see guess what my foster father left sji for teacher due money suck and sji will soon shut down due amount of student fuck up I can’t wait
dirk
ps I live in iowa now
January 17th, 2008 at 1:25 pm
Aaron, this sounds so terrible, and I’m so sorry that you had such an unfortunate experience across the board. It’s wonderful that you’ve overcome this and are succeeding at Gallaudet!!! (I hope my daughter considers Gally, too).
Mishka, thanks again for keeping the examples coming. I’m aware that small as the CI failure rate is, we should know about it, but I hope to see more positive stories of all the methodologies.
Susanna, you mention that “Kids today who are implanted young will not develop appropriate communication if they are taught “bilingually” by hearing parent.” I just want to make a quick correction: admittedly, it is quite a bit harder to do, and the initial language acquisition is slower, but if managed with the right professionals and levels of immersion (just as A-V and oral are), a child implanted at or before 2 yrs gains the same fine results as non-visual approaches by 4-5 years old (plus the child has then developed both ASL and English fluency). It’s not for everyone and much depends upon where you are living and what resources you have access to, but in our particular case, Children’s Hospital of Boston fully supports the bilingual method as the most effective approach for our little one.
January 17th, 2008 at 1:33 pm
Just wondering if the parents do have a right to ignore their Deaf children who complain about headaches? What if the parents do feel complain about paying medication that the health care insurance do not cover it??? I just am worried about “ignoring headaches” for the sweet Deaf CI children!
January 17th, 2008 at 1:35 pm
#7 displayed an excellent example of “sweeping under rug” comment.
#12 - small rate of CI failure? are you sure? is there a data of that? would love to see it in black and white.
January 17th, 2008 at 1:35 pm
Susanna, I feel you were minimizing deaf people who reported having headaches or other side effects due to cochlear implants. Please do give them credit for being intelligent. They are perfectly capable to determine if it is from cochlear implants or not, without you implying that it must be from eye strain, trying hard to hear, etc. Personally I find your implications downright insulting.
It appears that you are in denial and not willing to admit that side effects do arise from cochlear implants. If we are to be fair to people, we must be willing to cover both the positive AND negative aspects of cochlear implants. Not doing serves the desperate parents a severe injustice as they need to hear BOTH the pros and cons of cochlear implants. Not to do will also result in a lack of credibility on the person discussing this topic
January 17th, 2008 at 1:50 pm
One little question here:
Does Susanna have an implant?
January 17th, 2008 at 1:56 pm
I have no fear of the pros and cons, nor am I trying to be insulting. It is insulting for you to say that I’m in denial about side effects. The side effects are few and far between. I am very well aware of them, and have talked with lots of kids and parents with CIs. Over nearly a decade of experience, I can honestly say that there are few side effects, and most of them are extremely rare. I am being completely fair. The ant-CI movement continues to deny how safe and effective the CIs are, and I am reiterating the truth: they are very safe, they are very effective, and they do not cause pain.
When you have all of your data together, be sure to publish it in a professional journal.
January 17th, 2008 at 2:01 pm
The question…
January 17th, 2008 at 2:01 pm
I am talking directly to the deaf people who wear the cochlear implants.
Yes, it is insulting to see you tryinig to minimize the side effects of Aaron. If you are trying to be fair, why are you minimizing his experiences?, You have no idea what he experienced. I personally know him and I can vouch that they were indeed headaches from wearing the cochlear implant, not from the eye strain or straining to listen in a dark room. Unfortunately it is not as rare as you stated. If you want to, I will be more than happy to get more stories from others.
As stated many times, I am neutral in this subject, covering both the positives and negatives. I don’t get the impression that you are neutral.
January 17th, 2008 at 2:03 pm
Mishka, thank you for publishing my experiences. I’m glad to see more comments than the one on my web site.
Dirk, yes, I still remember you and I still remember my favorite teacher Jack. How have you been doing? Yes, I’m still at Gallaudet. Didn’t you know that when I was “kicked out” of dorm at SJI, Jack was considering to let me stay at his place instead of dorm, but he couldn’t. I was hoping he would, but later I realized it’s best I left SJI.
ASLRisen, only if I were smarter as a kid, I would say to myself, “Screw it” and pee all over her office for not letting me go to bathroom.
Any more question, Ill be happy to answer.
January 17th, 2008 at 2:08 pm
What if the professionals and doctors do not want me to see and talk with the other kids and parents who have experience with painful side of effects? What if the professionals and doctors do only want me to see and talk with the other kids and parents with more positive with CIs only?? My concern what if the professionals and doctors are only interested to make more money for themselves more than caring for the kids who have health problems with the CI? They CI kids need to have good health to focus better on education??? What if the professionals or teachers tell other parents not to have their sweet CI kids to hang around with the other kids who have problems with their own CI ???
January 17th, 2008 at 2:17 pm
Oh BIG Hallo Aaron! Oh, I am so glad that you do still have good sense of humor! Smile!
January 17th, 2008 at 2:32 pm
Susanna,
If you are going to make a comment like this then please send the research to back up this statement rather than basing this on what you choose to see and experience:
“Kids today who are implanted young will not develop appropriate communication if they are taught “bilingually” by hearing parent. Perhaps they will achieve it with deaf parents, but hearing parents are inadequate to not use sign language fluently and will therefore stunt the growth of their kids if they use primarily sign. Having seen kids who use a bit of sign and speech as well, I can say that they don’t develop as quickly as the implanted kids who are specifically focusing on auditory skills.”
I would also like to know how a baby and toddler can tell their parents that something is wrong with the CI other than cry or throw a tantrum? I have a feeling it might be years before they are old enough to make this connection to be able to explain what is wrong.
There is a lot of information that is not shared with the general public. Only the success stories are shared by the CI companies and the AVT programs and the parents connected to them. Fortunately there are people like Aaron to give us a more honest opinion.
January 17th, 2008 at 2:47 pm
Whoo! Whoo! I am amused when hearing parents or professionals show their ignorance in deaf issues.
That’s trouble when they have horse blinders on!
They are the ones causing problems.
Knowledge is power!
What the CI users are trying to say are telling truth!
I have seen CI companies sweeping dirt under rugs…and same for one friend who tried to do her research. She contacted Gallaudet University to find out more….the University were unable to reply to her request. It was like snow job or cover up.
Like I said, money talks! It is the greed that engulfs the audists into more greed and more control over the useless technology. It is just plain expensive hearing aids.
It is plain snake oil! Same old practice from the old westerns!
They (audists/doctors/oral programs) are laughing their way to banks for pulling wool over poor parents.
Truth will prevail!
Shame on those liars in this scandal and conspiracy to hurt many poor deaf children!
Having deaf children hear is a pipe dream!
The only one who can perform miracles is the man upstairs! Not any medical profession or any of us!
Capsice?
January 17th, 2008 at 3:03 pm
Well…well…well………oh jeesh!
Let me explain this, you got Ci in 1990. Unfortunately, the technology isn’t that great. From 2005 to present, I would support Ci on babies and whomever needs them. From babies whom received Ci in 2005 will achieve equally as hearing person. I’ve seen and watch them succeeding it. it’s amazing technology to have. They’ve improved the sound quality and durability. The surgery is much less invasive these days!
On the demographics issue nowdays, 80% of these deaf babies are getting Ci annually in the US. That means, culturally deaf in 2025 to 2030 will shrink to 50% and depleting. Face it, it’s the fact. Ci works!
Most importantly, we need to preserve our ASL language as of now and be open with Ci, too. Otherwise, we’ll destroy ourselves just like the indians!
it’s all about marketing!
January 17th, 2008 at 3:05 pm
I suppose Susanna has chosen to leave my question unanswered.
*Tsk*
January 17th, 2008 at 3:05 pm
The system at SJI had not changed in years. The principal, Sr. Joyce had to resign from her duty due to the complaints she received.
SJI have the three schools in different states with the millions of dollars to keep their businesses running.
However, SJI will be facing some arduous time to decline more students not to attend that school within 20 years from now. Wasting money SJI boards made for three schools was stupid decision.
White Ghost
January 17th, 2008 at 3:12 pm
How am I suppose to know if my baby is trying to communicate with me if not comfortable with CI after surgery? How long and how often will the cry for not wanting to have CI ?
January 17th, 2008 at 3:13 pm
Yes, Sr. Joyce should be punished for her crimes with deaf children. She abused them a lot during her 50 years!!!! She should go to prison for abuses. How can God forgive her for repeated sins in her 50 years! It is no excuse. St. Peter will not let her in through the pearly gates.
January 17th, 2008 at 3:21 pm
Parents like Susanna and I have come onto the DeafRead blogs in an effort to tell our side of things. While many are openminded and interested in what we have to say, there are those who will deny and argue against anything and everything positive that we have to say about CIs and Auditory-Verbal. We are, in a way, throwing ourselves into the lion’s den coming onto these sites. We don’t need to do it. There are sites where we are at home just as you are here. In particular, one listserv for parents of children with CIs has over 1400 members. Others for both parents and adult CI users have similar numbers. If you only get your “facts” from those who espouse your views, your perception will be skewed. We have come onto here even though we are by far in the minority so that we can learn from you. My challenge to you is to do the same and hear from the thousands who are successful with CIs.
January 17th, 2008 at 3:25 pm
Aaron,
Wow, I learn alot of your frustration and unhappiness everything what you go through hard time and now your mom seem finally understood after you were blew up and ex- Tim. I complete understood and Thank you for sharing of your extermely diffiuclt. You are not alone!
I have heard of the stories by other .. but your stories made me interesting and love story. Now you move on and doing excellent story.. I keep tell my husband about your story.
January 17th, 2008 at 3:26 pm
Melissa, that’s what I am trying to do, bring a balanced view of c.i., covering both sides of the stories.
I appreciate your willingness to share your daughter’s story, as inspiring as it is. We need to hear the positive stories, too.
We all need to open our minds to both the positives and negatives. This way, we can learn so much from each other and so do the parents of deaf kids/babies.
January 17th, 2008 at 3:30 pm
Supporting Ci on babies and whomever needs them from the year of 2005 to present but not supporting before the year of 2004 to 1980’s CI? That seems NOT right!
January 17th, 2008 at 3:42 pm
Thanks Misha for presenting both sides to the CI controversy. Keep it up!!
In my school district where I work, about 80 percent of our deaf CI children are mainstreamed with or without interpreters, and about twenty percent are placed full time or half time in DHH SDC class (SDC=Special Day Class) based on raw data I have. What is interesting is the majority of the CI kids placed in SDC class are those who come from families who speak a language other than English such as Spanish(with the exception of two ASL speaking families with CI kids fully mainstreamed) and childen from families of lower SES. I do not want to appear discriminatory, but that is what is happening in many school districts.
If you go to the CI Camp in Colorado, almost all of the CI kids there are white and of college educated families and families with money.
California is a state where more people speak Spanish than English. I assume it goes the same for other states with high Spanish speaking population. The deaf gene I was told runs high among Latinos. The kids with CIs coming from Spanish speaking families, I’ve noticed, end up needing visual communication to assist them with language and speech development. This is merely an observation of mine.
Aaron’s story reflects those CI children who are struggling. Yes, they are smaller in number when compared to those that do just as well as hearing peers without a visual language.
Just keep this in mind of those children who struggle. They NEED ASL or a visual system of communication even with implants.
January 17th, 2008 at 3:43 pm
Melissa,
Thousands? I’ve yet to see a number with BOTH the successes AND the failures of cochlear implantation.
Could you present us with this information?
January 17th, 2008 at 3:49 pm
freeze,
Yes, my CI is obsolete. Sometimes I wondered what’s like to have present CI because I’ve heard very few friends saying that it is much different that old one.
My deaf friend spend her time in residential deaf school most of her childhood life until she became teenager, she decided to go to hearing school instead. It was her choice. I am against the idea of implanting one in deaf babies but I do not tell parents what to do instead tell them my experiences. However, one day she imed me and told me that she decided to get CI and want to hear from my opinions. She was worried because she know I didn’t like CI. What did I say? I told her I have her support because she is adult. In few months later, she went for it and got it. She said she’s happy so that’s good, right?
I wouldn’t want to implant my future children until they’re 13, an age where children can be capable to reason and make decisions.
However, supporting CI on babies only the technology is after 2005, not before 2005? That’s misleading statement, even it’s partly true that technology is much more better or advanced. Technology always have their cons and pros. In 20 years from now, today’s technology probably obsolete such as stem cell or other medical discoveries.
January 17th, 2008 at 3:51 pm
I know of several late-deafened adult CI-wearers who suffer with pain when things go wrong with the CI or mappings. It can be extremely painful at times.
One reason I’m hesitant to go through with it myself is because I suffer from horrible migraines several times a month. I don’t know if CI’s cause migraines, but I don’t want to add yet another thing to the mystery of my head pain.
I would have concerns about implanting a baby.
January 17th, 2008 at 3:52 pm
Hey, saw the video called “The Lord of Robots”! I wouldn’t want my Deaf baby to become a Lord of Robot to harm and invade the other innocent sweet Deaf kids and the old 80’s and 90’s CI Deaf human people. The Lord of Robots from Boston, Mass are planning to have their own powerful war against us humans! They want to make us human disappear on this EARth!
January 17th, 2008 at 3:57 pm
There are over 100,000 people with CIs. On the listerv for parents of children with CIs, there are over 1400 members. As discussed before, the terms success and failure are relative. How would one define it in order to collect statistics? I can tell you that the actual hard failures of CIs where the devices themselves stop working is about 2%. My point is that, if you want to read about far more CI successes than failures, come to the sites where people with perceptions different from yours congregate.
Also, as to the date of 2005 for when CIs started working - That is ludicrous. My younger daughter has a Nucleus 22 in one ear. That is the first multichannel CI, and she received it in 1996. Her auditory comprehension only in that ear tests at 96%.
January 17th, 2008 at 4:04 pm
and the failures?…
January 17th, 2008 at 4:04 pm
Aaron,
Well, wait until 10 more years from now, we’ll know the status from the infants with the CIs.
I understand that you decided to obsolete your CI due to the health reason you faced.
I was told that the nun at SJI took the two CI students and she intentionally made them “bump at each others’ heads.” (Actually, the CI students received their punishment.) Those two CI students ended up their head injuries. I wish those ex-CI students will tell us about their head injuries in this blog.
White Ghost
January 17th, 2008 at 4:07 pm
I’m looking for a number.
An actual and honest number.
January 17th, 2008 at 4:22 pm
Susanna, I find it hard to believe you have dealt with thousands of parents. What position do you have that enables you to deal with thousands of parents?
Additionally, it is quite offensive to me that you are continuing to minimize the negative side effects of CIs. The world is not perfect. CIs are not perfect. The doctors are not perfect. You are not perfect.
If you and others are sincere in the effort to build bridges, it’s high time that you admit that there ARE negative side effects of CIs and many people do experience it. Otherwise, why should we bother at this attempt?
Your side is just as valid as ours. And if people continue to dismiss our views, things will only get worse, not better.
January 17th, 2008 at 4:24 pm
MELISSA says:
We are, in a way, throwing ourselves into the lion’s den coming onto these sites. We don’t need to do it. There are sites where we are at home just as you are here. In particular, one listserv for parents of children with CIs has over 1400 members.
I SAY:
Thank you! It is a lion’s den, how so true! It also has several sweet lionesses. Do not give up on us.
Aaron’s story is a common one among oral kids of previous generations. I cannot say for the present. They seem to be doing a lot better.
January 17th, 2008 at 4:43 pm
Things are not always as they seem.
January 17th, 2008 at 4:45 pm
Jeffrey, it’s not a secret: no, I do not have a CI. However I do have to deal with children with bilateral implants all day (my own) and I can guarantee you that we’d be in the know if they suffered from frequent headaches. Children do not hide pain. I asked one of mine today if he ever had headaches from his CI and he looked at me like I was from mars. “No, why?”
It is not philosophically relevant to ask if I have on, either. Mishkazena does not, either, but she is perfectly capable of discussion on the matter. Since I have children with implants and since I am with them day and night, and have a cumulative experience of a decade of experience with them, plus I have been in constant communication with parents of other kids with CIs on a very active email discussion group of thousands, I would say that I probably have more experience than a deaf adult who has only spoken with anti-CI adults.
But again, it’s not really relevant if I have one. The experiences of one are always the “study of one:” they don’t qualify for true scientific studies. One has to have lots of research to be able to quantify this kind of thing. I believe that the research of dozens of doctors over many decades has borne out the safety and efficacy of CIs, both today and those from 20 years ago.
January 17th, 2008 at 4:46 pm
White Ghost, we don’t have to wait a decade. Kids implanted in infancy are already a decade old. They are happy and successful.
January 17th, 2008 at 4:47 pm
I know I’m going off a bit here, but, I’m curious White Ghost, what years were you at SJI?
On the subject, you know, I’ve heard both sides for years and I’m aware that technology gets better and CI’s are better than ever before. But, even so, every individual will experience differently. As with any operations, there’s risk and with any implants, there’s always risk of something going wrong. Humans are obsessed with perfection. For some it’s successful, for other’s it isn’t and for some, they are happy and for others they are not. The question here is: Are the companies that make CI being honest with all their data?
January 17th, 2008 at 4:52 pm
Mishka,
Regarding the comment that I ought to be neutral… why would I? Of course I am not neutral, nor did I ever state that I was. I am very, very much in favor of cochlear implants. I’ve seen the results, the research and know the benefits firsthand.
So, no, I am not neutral. I am not saying that Aaron’s experience is not his own, but I do not believe that cochlear implants cause headaches. I believe that he experienced headaches, but there are multiple possible reasons, from straining to hear in an classroom environment which was not advantageous to who knows what. It’s not a personal attack. I’m just stating the facts. CI sometimes cause tinnitus; they do not cause headaches. People do get headaches– implantees and non-implantees. CIs can also “cure” tinnitus in some people.
There is no reason that someone can not discuss this issue with truth and fairness even when one is in favor of cochlear implants.
January 17th, 2008 at 4:55 pm
I don’t think it’s fair and truthful of you, Susanna, to blow off Aaron’s story. Because that’s exactly what you’re doing. And for you to insinuate that MZ is not presenting a balanced view is so disgusting and egregious to me that I’m done talking with you.
January 17th, 2008 at 4:56 pm
Deaf Advocate,
It’s people like you that cause parents of deaf infants to RUN not walk to the cochlear implant surgeon. Let’s face it, you’re not making sense. When I can talk to my child while driving and he’s sitting in the back of the van… you gotta know that they work. He can even do this with the radio on, on the highway.
This is far from snake oil.
January 17th, 2008 at 5:10 pm
It is not how well I can hear or speak.
It is how well I was taught to develop a language to learn how to learn.
A deaf baby can be taught to communicate before the age of 6 months with the parents but using visual language(ASL) but verbal type of communication takes much longer to develop until the baby reaches 12 to 18 months.
This is why bilingual method should be recommended for all deaf babies, as a matter of fact, thousands of hearing babies have great progress in language development when parents teach them sign language before they were able to learn speech.
It is sad that parents are told that sign language is a no, no for deaf babies but acceptable for hearing babies.
John Egbert
January 17th, 2008 at 5:14 pm
Typo mistake on my comment,
A deaf baby can be taught to communicate before the age of 6 months with the parents (butxxxx) by using visual language(ASL) but verbal type of communication takes much longer to develop until the baby reaches 12 to 18 months.
John
January 17th, 2008 at 5:15 pm
Susanna,
What? You had the audicity to accuse me of not being neutral? After I covered Melissa and Rachel’s stories?
You just admitted that you are not neutral at all. You advocate for C.I. so you are obviously invested in promoting the positives of c.i. only
Well, unlike you, I am truly neutral, so I’m covering both the positive and negative aspects of cochlear implants. I report the truth. I don’t pretend to imply that everything is just dandy fine.
January 17th, 2008 at 5:30 pm
The biggest factor in whether or not a CI will be effective, is how completely the auditory center of the brain is or can be developed.
The CI is very effective for post-lingually deafened adults because the auditory center of their brain developed fully while they had hearing.
The CI is very effective for babies because the auditory center of their brain is still in the development stage where it can easily adapt to sound.
The CI is not effective with older kids, teens or adults who have had little to no hearing as infants or toddlers. The auditory center of their brain just isn’t well equipped to make sense of sound.
The majority of people who fall into the “failed” catagory fall into the third group. I also wish there were better numbers published. If you put the implant recipients into those 3 catagories, I think it would be very clear as to where to expect “success” and where not to.
The internal device does not get surgically removed and replaced just for an upgrade. It only gets removed if it fails. It does not get implanted into the brain. It goes only into the cochlea of the ear.
If you are having headaches when the implant is off, there is something seriously wrong. If you only get the headaches when it is on, then either the map is wrong, or you just cannot make sense of the sound. This is much more common with older kids and teens than babies and toddlers. There are things that can be done about a bad map, and if you are really dedicated, there are ways to work through the sound issues. But that is a ton of work, and needs to be recognized before implantation. There will be a lot of speech and language therapy required after implantation. That is how the brain learns to make sense of the sound. Don’t get an implant if you don’t want to do speech therapy.
Hopefully this will help clarify the implant stuff.
January 17th, 2008 at 5:36 pm
Part of the confusion seems to be not knowing what devices respondents are using. I don’t have a CI, had experience only with super-powered hearing aids, do not use any, and am slowly, skeptically coming to accept CI’s.
In the future, within my son’s lifetime he will be seeing formerly deaf children functioning more like hearing than Deaf people.
He probably will also face the decision whether to implant his future Deaf children. I hope by that time, he will have reliable scientific and social numbers to base his decision upon, as well as reliable information from his CI friends.
Certainly he will enthusiastically sponsor bilingual education for his kids and be part of the enlightened Deaf community members that accepts all, CI or not, into their society.
I am not neutral, people. I am skeptic enough to not want anything to do with the CI, and would advise my son against it for himself. I have seen enough of oralist deceptions and families split apart by the dedicated propaganda of audist professionals. I have heard enough about CI failures and side effects. But, I’m open, even while believing the risks aren’t worth it. Maybe in another 20 years…
January 17th, 2008 at 5:39 pm
After I stopped using CI, I rarely have headaches anymore. When I was kid, I was complaining of headaches and wanted to take a break from CI, but my mom forced me to wear it anyway.
There is no research based on the side effects between CI and headache. I do get headaches while wearing CI. But I am not sure about other CI users. So I’m not saying CI do cause headaches but I’m just saying it does to me. Or what if those with CI thought headaches are normal without realizing it does cause it? It’s a problem.
January 17th, 2008 at 5:47 pm
I may be way off base, but I see that most of the damage is done to children who are deprived of language. If the parents can provide complete language to their infants, the children do well. It is when they are deprived of language that problems occur. I have no issues with ASL. It is a complete language, and kids who have access to it do well. We chose implantation with SEE until our daughter could handle oral communication alone. The point is, that she was never without language. First she had hearing, then after the meningitis she had sign language and then she got an implant. Trust me, we soaked her in language. And she is does great in school, hears well, speaks well and most importantly, she is happy.
I feel very bad for what Aaron went through. His mom deprived him of language of any kind. If she had put his needs above her misconceptions, that wouldn’t have happened.
January 17th, 2008 at 6:18 pm
Deaf Pundit, that’s fine if you’re done. I did not dismiss Aaron’s story, only the idea that it’s a “fact” that CIs cause headaches and, as a result, all deaf infants ought to be bilingual because those CIs are notoriously painful/ineffective.
I have no bones to pick with Aaron, nor you. Simply put, I will not sit by idly while people continue to mislead parents about cochlear implants. To be sure, the number of parents which will find this blog are fairly small, but just in case, I need to be clear. They work. They are effective.
I have had dealings with thousands of parents. On our email discussion group (currently 1400 plus members) there are a myriad of parents whose stories are very much like my kids stories. Not only that, but over the years many more parents have come through the discussion group. So yes, I have heard thousands of successful stories. Parents with problem have appeared at the normal rate, too, which is about 2% plus or minus depending on their device, accidents and what have you.
Mishka, I did NOT say that you were not neutral. I said I AM NOT neutral. I am obviously in favor. I said that, but that doesn’t mean that I can’t discuss things rationally and truthfully.
Having said that, it matters not whose stories you put on your website; anyone could do that. Any philosophy professor would say that it is entirely impossible to be completely neutral, anyway. And who really cares? If we all were neutral all the time in order to discuss anything (religion, politics, etc.) we’d all believe in nothing.
Mishka, I think it’s possibly beneficial for the deaf community for you to post these blogs. But it may be entirely detrimental to parents who come across them in the early stages if they even consider choosing against a CI for an infant. That is my personal opinion. I am not neutral, I am speaking in favor of the choice which allows deaf infants to avoid such painful situations as Aaron described in his childhood.
January 17th, 2008 at 6:36 pm
Well, Susanna, regardless of what you may think, I am truly neutral.
Some Deaf people are incredibly upset with me for covering this series. You cannot say that I may not be so neutral, when I’ve already experienced severe backlash because I dared to explore this highly controversial topic. I even invited you and Melissa to come over and participate in this discussion. If this doesn’t indicate that I am neutral, then I don’t know what else to say.
Your last comment disturbs me. It seems you are intent in shielding the parents from reading about the negative consequences of the cochlear implants. In other words, you want to propagandize only the benefits of the cochlear implants. However, that defeats my purpose which is to expose the truth, whether we like the results or not.
You were out of line when you attempted to dismiss the experiences of Aaron with his cochlear implant. Contrary to what you think, the headache issue isn’t isolated. If you cannot handle the truth of this series covering both the positive and negative aspects of cochlear implants, I would suggest you refrain from reading the series.
P.S. I just finished reading your comments, Susanna. In fact, I think you shouldn’t come because it’s obvious you do not want any negative aspect of cochlear implant exposed at all. To the point that you would imply that perhaps I am not so neutral and that Deaf people ‘mislead’ about their own stories? The arrogance! I am truly sorry I invited you. I had no idea you weren’t interested in having a constructive dialogue with us and that you would be so bent on sweeping things under the carpet.
January 17th, 2008 at 6:48 pm
Susanne and Melissa,
Just curious?? Do you work directly or indirectly with an AVT Program, a CI company, or serve on the Board of AGBell??
January 17th, 2008 at 6:51 pm
Would it be safe to say that only 2% of the hearing parents of deaf children actually seek advice from Deaf professionals, Deaf students, and Deaf organizations?
I think this could be true however, I cannot say that it is a fact.
I will say, though, that fear is rampant in the minds of hearing people upon discovering that their child cannot hear, thus the majority actually RUN to the medical specialists with hopes to diminish these fears.
It takes courage to accept things as they are and often that courage is not found among hearing parents of deaf children.
Call me what you want, say what you will, but I’m not going buy any success story of cochlear implantees until that person has actually began the journey what many of us know to be: Deafhood.
Sometimes it takes years and even decades before a deaf person can actually digest their own being and realize that they’ve been misled.
Sometimes,.. they never know.
I applaud the “2%” who do inquire within the Deaf Community because that’s the initiative necessary in order to begin the acceptance of a Deaf child.
January 17th, 2008 at 6:58 pm
Wow, after i left and came back, already 60 comments? positive aspects of deaf community? oh yea, whatever (putting it aside). see, that proved my point in my previous comment in mz’s previous blog post that i’m wasting my time even commenting last time. thank you all!
Susanna, that’s good that you admitted that you are not willing to listen to us because you insisted that you’ll not be unbiased. so why did you come to participate in this open discussion? ahh, trying to convince us to approve of cochlear implants or at least to accept and approve that choice.
well, that is not going to convince me at all when it comes to “fixing” - oops, i remember it’s now offensive term - okay, to “altering” a deaf being. being deaf is not life-and-death matter to begin with.
therefore, i advocate for sign language because all other medical professionals and agencies are not unbiased.
once again, thank you all!
January 17th, 2008 at 7:22 pm
Hey there ! please call me vp 301 450 2228 I want to ask u qq about ur story . we have same situtation except i dont have ci BUT my parents asked me twice i turned it down…
January 17th, 2008 at 8:25 pm
Hearing Mom-
I do not work for A.G. Bell, never have, but I am a member. I used to volunteer for our local Auditory-Verbal center helping to write their newsletter, as well as for Cochlear Implant Association, Inc., years ago but haven’t since 2000.
January 17th, 2008 at 8:37 pm
Regarding bias - I’d say that 99% of the people posting on DeafRead are biased. Clearly, all of you insisting that babies should be raised with ASL are biased. How can we not have opinions about major issues that deeply affect us? I’m not sure why being biased based on personal experience is viewed as a bad thing. I think that there are some, as Mishka says she is, who are trying to sort through the various stories, figure out the truth, and make an informed opinion.
I am absolutely biased in favor of A-V and CIs without ASL. How could anyone have read my daughter’s story and not see that? However, that doesn’t mean that I think that this is absolutely the way to go for every parent and child. I believe that it can work as well for most children as it has for my daughters IF the parents are committed to putting the time and energy into working with their child, if the child has no other issues that would affect his/her ability to hear with the CI, and if the parents have a good Cert. AVT to guide them.
As for Aaron’s story - It is unfortunate that he experienced what he did, but you can’t equate his experience with the vast majority of CI children today. As I said before, visit my groups, and you will not hear a single story like this. Susanna is not denying his experience, and neither am I, but I would say that what happened to him is highly unlikely today. I can’t imagine a parent insisting that a child wear a CI despite headaches. After Rachel was reimplanted, the audiologist mapped one of her electrodes incorrectly, and certain sounds were painful to her. We were back at the audiologist two days later to correct the problem, and she was fine after that. As parents dealing with a child born with any type of issue or disability, we have to quickly become experts and be willing to question professionals regardless of what path we choose.
January 17th, 2008 at 8:54 pm
If Susanna isn’t being honest about cochlear implants, how do we know whether Melissa and Rachel aren’t doing the same thing?
January 17th, 2008 at 8:56 pm
Wow. What a breathtaking story. How close it hits to home! Wow.
Here is one quote from Aaron:
“I remember my frustration with my teacher when I really didn’t HEAR ANYTHING with my hearing aids so I decided to play with switches. It actually went on and I actually hear something. Then teacher saw me and scolded me, forcecd me to turned off. I was dumbfounded and didn’t understand why teacher do that until I was older enough to suspect that they are trying to prove that hearing aids don’t work on me so I can become best candidate for Cochlear Implant.”
My response:
If that is true, it is so outrageous. That is mental abuse by that teacher to treat a Deaf person like that. Teachers! Grown up adults with no feeling treating a child like that is not acceptable and has no excuse for that.
Here is another awesomely outrageous quote:
“Of course, I was stubborn to learn ASL because I was told by some staffs that “ASL make deaf people look stupid” or “Once you learn ASL, you’ll never use lipreading and talking again.”
My response: No adult should ever tell a child that he or she would look stupid for any reason, for talking or for signing in ASL. And for everyone’s information, I still know how to lipread and I still have some speech skills even though I have turned to ASL as a primary language. I have no illusions about the fact I don’t speak as good as others can. So what. At least I have good ASL signing skills. No use to weep over the fact I can’t speak as articulately and clearly as one would like to if raised oral. It’s a waste of time and useless shedding of emotion of speech skills that never was to be.
Another quote: “It took me a lot of thinking and I told my mom that I wanted to go to deaf school that allowed ASL. She didn’t want me to go and we ended up in argument.”
My Response:
ME TOO. I had to argue my own case with my parent in order to be allowed to transfer to the Deaf school. It worked out for me, although my GPA was pretty bad. It did work wonders for me socially and widened the scope for me, and introduced me to Deaf culture. That way, later in life, I was not so foreign or alien to the Deaf community as many others from the Deaf school knew and remembered me. It paid off, although I wish I put more into my education at the Deaf school and end up with a better GPA. It was not the Deaf school’s fault. I was just too excited being in a Deaf school and got caught up with the social life.
Take note of this important and catchy quote:
“I am attending at Gallaudet University where I am much happier with my social life more than in hearing world. It doesnt mean I’ll stay out of hearing world forever because I am still part of it. My mom finally learn some signs and fingerspelling and I am happy for that because we became more closer than ever. We still talk but when I miss words she said, she would fingerspell for me. It had helped decrease my frustration.”
My Response:
Does that ring any bells? Or make any sense? To me, it makes perfectly sense. Having family willing later in life to make up for it by learning more signs and becoming more adept at fingerspelling does alleviate frustration. It brings more inclusion for the Deaf individual into the hearing family. People think we are a mental case if we get frustrated and being frustrated does alienate us from family and even or own in-laws or others, but really, that is to their ignorance in not understanding how to accomodate us. Sometimes we feel like they look at us as self-centered but really it was about inclusion. Oralism is not inclusive always. ASL is inclusive for everybody if they have the heart and the purpose to learn the language.
January 17th, 2008 at 8:58 pm
It looks to me as if Susan doesn’t want the truth to come out regarding negative experiences with implants, actually implying that people like Aaron are trying to mislead others. Doesn’t she want to get all sides of the story, in order to arrive at the truth? That’s all MZ is trying to do, get all sides without dismissing anyone out of hand.
January 17th, 2008 at 9:44 pm
A Voice of Reason -
That was quite an offensive comment! First of all, Susanna is telling the truth. Kids today are exactly as successful as she says and complications are rare. As I said before, we can’t prove it other than by example, which is all that you are doing as well. As I said, come to our websites and listservs and hear from the other 1400 parents.
If you think we are lying, then how can you trust that anyone who posts is telling the truth? How do I know that Aaron is telling the truth? - because I believe that he is being honest in telling of what he went through. If you choose, instead, to be so skeptical, then I feel sorry for you.
For what it’s worth, ask someone with normal hearing to visit Rachel’s website, http://www.cochlearimplantonline.com, and click on “Life” and then on the videos. They will be able to hear my girls speaking and will be able to verify that she does, in fact, do as well as she and I say she does.
January 17th, 2008 at 11:30 pm
Susanna: I dismiss your comments mainly because you are *hearing* individual who claimed to think the best FOR us to start with.
I already had seen many, many and many deaf individuals discretely putting their CIs away when their parents, their hearing friends and their hearing teachers are out of their sight. Why?
They dont like it. They had to wear it to satisfy *YOUR* needs, not to their needs.
But you’ll distort anything else to justify the usage of CIs.
People like you made me sneer at people like you.
R-
January 18th, 2008 at 12:04 am
As one of the co-founders of the discussion forum for parents that has been mentioned here, I just wanted to add a comment.
First up many new parents to our list are in the process of making the decision whether or not to implant their child. They actually request information from our group on the pros and cons and that information is readily supplied. If in fact the group only existed in order to only sell the positives of CIs then only the pros would ever appear.
I have been reading this blog and the comments for only a short while but the reaction of some of the more outspoken anti-CI bloggers is precisely the reason that myself and another parent set up our discussion forum in the first place! There were many parents starting to contact us individually about cochlear implants. What they wanted was some accurate information about implants and a place to ask questions where they weren’t told they were child abusers, or that they were deliberately misfiguring their child, or that their children would grow up to hate them, or that they were not fit to be the parents of a deaf child, or that they had not accepted their child for who he/she is. Make no mistake these comments have been made to far too many parents who found themselves in this situation.
My son was implanted in 1995 and the discussion forum set up in 1998. This was very much the reaction these parents received from members of the Deaf Community when they sought advice or input. As co-moderator let me try to give you some facts about our forum:
1400+ current members have found their way to us and joined in a bid to gain support/information and advice from others in a similar situation.
The forum does not condone belittling anyone or any mode of communication, it welcomes all irrespective of the mode of communication parents choose to use with their CI child.
Many parents share stories of their children’s successes. Parents support each other in looking into pros and cons of various education options and similar issues.
10 years on this group continues to grow, so clearly there is a need.
I appreciate the fact that the majority of people here are genuinely interested to know more and are maintaining an open mind about CIs in babies and young kids and possible outcomes for those kids. I respect you all very much for doing that.
Perhaps past experiences have made some bloggers feel that some people want to misrepresent the truth of CIs. However I can assure you that for all the parents on the dicussion forum I co-founded, our aim is simply to ensure parents have access to the information they need to make an informed decision about the process of implanting their child, it really is as simple as that.
Naomi
January 18th, 2008 at 5:58 am
Thank you Aaron for sharing with us your testimony. Thank you MZ for showing the other side of CI. These issues should be heard.
January 18th, 2008 at 6:17 am
*whistle*
I am more in the lines with Dianrez, even though I am more comfortable with the idea of CIs nowadays, but I DO want to see the real, PUBLISHED numbers. I do agree with kw about stem cells… what if the cochlear implants got advanced, due to stem cells with the controlled ability to grow certain organs? That would be another controversy :o/.
I DO think that ASL or any signed languages or any visual communication modes such as cued speech, etc., could benefit more, thrown in AVT. Like everyone else says, CI people are still deaf. ASL is just another language, equilavent to English, French, Spanish, etc… NOT superior NOR inferior.
However, I understand where hearing parents are coming from, they look at the rational, logical side of the decision making… we live in an English-speaking society, filled with hearing people, wanting the same or more opportunities for their deaf child as other hearing child, etc.
No parental decisions are easy to make. Parents… deaf and hearing… have their own ideas of what a “perfect” child should be like.
January 18th, 2008 at 10:15 am
Aaron, thank you for sharing your story as painful as it was to read, not for the ci issue, but for your frustration and how you were treated as a child. Every child is different and it is the parent’s job to identify his/her needs, I am really happy for you that your mom is starting to do this.
I believe that Mishka is doing this to provide information…I hope not to try to “convince” people to sway their opinions one way or another. This series promotes awareness, whether there are positive or negative ci experiences, the important aspect is to be aware of both to be able to make educated decisions.
In regard to Melissa and Naomi, these are two women who I admire and respect, who have helped me based on experiences they have already lived…we share a community, a protected community. If I consider the idea of anti-ci people joining that personal community filled with stories of our children, I flinch to think that intimacy could be compromised. This helps me even more to appreciate the fact that so many people in your community are allowing our presence…allowing us to share. None of us are here to convince anyone, none of us are lying or trying to glorify our stories. We are proud just like you are proud and we want to share just like you do. Mishka, thank you for this opportunity…Jodi
January 18th, 2008 at 10:31 am
My question:
On the following statement from “Melissa”:
“For what it’s worth, ask someone with normal hearing to visit Rachel’s website, http://www.cochlearimplantonline.com, and click on “Life” and then on the videos. They will be able to hear my girls speaking and will be able to verify that she does, in fact, do as well as she and I say she does.”
What an insult. Why is this video not captioned?
You have clearly left an impression that you are
not sensitive to the Deaf and Hearing impaired.
I have an oralist background-and I am doing just fine, thank you.
I have work in such places as the White House, and other agencies.
You have the right to your views.
But you don’t have the right to advocate from a
“slanted’ base (bias). You keep saying that you have been in touch with “thousands” of parents who are grateful of CI’s. I’ve been in grad school- and I’ve studied statistics. Any competent statistician will tell you that your numbers are flawed because it does not takes into account the “Repeated Rule”, i.e. for every one positive number, there is a negative number.
So while, you are entitled to your views-at least be honest with your numbers.
January 18th, 2008 at 12:38 pm
Dear 76,
A lot of us started to blog before beginning to create a dialogue on deafread.com. Please do not take it as an insult. I tried to understand Aidan’s robot video and can’t understand because there are no captions. This is a good place to start, to begin making the info more accessible for all..so, how exactly does one go about adding captions to a video? I am sooo clueless! Help, Jodi
January 18th, 2008 at 1:15 pm
[…] http://blog.deafread.com/mishkazena/2008/01/17/ci-teen-my-struggle-with-social-life/ […]
January 18th, 2008 at 1:32 pm
[…] Mishka Zena Endless Pondering « CI Teen: My Struggle With Social Life […]
January 18th, 2008 at 1:39 pm
The fact that you say “not to take it as an insult” tells me that YOU do not understand Deaf community/Deaf culture.
The writer(Melissa) asks us to go check out HER site, then informs us that we need to get a hearing person to look at HER evidence to truely understand HER point-of -view!! GO figure!!!!!!!!
As for your question: I am sure there are alot of other ways she could have handle this,i.e. contacting people at Deafread. OR she could have provided a transcript to Misha Zena to publiish-I am sure that Eliizabeth would have publish it-instead she forces us to go out of way to get to try to see her Point-of view!
Total lack of sensitvity! And an insult.
And by the way- my name is Raphael J. St. Johns -not “76″
January 18th, 2008 at 1:51 pm
Thanks for sharing Aaron’s story and I’m sorry he had difficult times. How can his parents force him to wear CI when he had a headache? They should have sent him to the CI center immediately. I would have done the same thing if my daughter experiences any pain while wearing CI. She hasn’t experienced any pain for nearly a year and likes CI a lot better than hearing aids.
I have inquired many CI adults about their experiences and they all had positive experiences and didn’t have any pain. I got the same answers from many parents with CI children. I think the CI failures may be due to poor surgery, wrong map, and many other possible factors. However, I met one deaf adult who just received CI and he told me that he was not used to hearing all the sounds all day and he got exhausted at the end of the day but he enjoys the CI. Also, many of CI adults I met told me that they wished they received CI as young children or toddlers so that they can learn to listen better with the CI. Those are one of reasons I decided to give my daughter a CI as a toddler since hearing aids didn’t benefit her and I don’t regret my decision as she s been progressing very well in both ASL and spoken English.
I’d like to hear the accurate statistics of CI successes and failures in both children and adults, too. However, I have researched on CI extensively and inquired CI professionals and that led me and my husband to decide to give CI to our daughter.
January 18th, 2008 at 7:03 pm
Whoa, Raphael J. St. Johns! I don’t think Jodi or Melissa were being intentional about leaving out captioning of their website videos. They may not know that captioning software is available now. In fact Jodi just asked at the end of her comment how to get captions on videos herself.
As for the reference to using a hearing person to look at the video, Melissa meant for those who don’t hear to use someone who can hear her daughter speaking to get an accurate evaluation of the girl’s speech, what did it sound like, not necessarily on what the girl was saying. Yes, she could have provided a transcript, but I don’t think the words were what Melissa was alluding to. I don’t think she meant to put d/Deaf people down.
BTW, Jodi addressed you as 76 because your comment is #76 in this blog, I don’t think she meant to slight you in the least. Many commenters/ bloggers do it all the time.
These CI community bloggers/commenters are new to DR, so give them the benefit of the doubt. Yes, they need to learn some sensitivity about the deaf community, so give them some time to feel their way around on DR. Some of them will pick it up with gentle reminders, but jumping on them angrily at first mistake is not conducive to any dialogue.
January 18th, 2008 at 9:43 pm
Thank you, Aaron for sharing this with us.
Parents who got CI’s in their children’s heads are controllers.
Good job, MZ!
January 19th, 2008 at 12:12 am
I would like to address clearly to NAOMI:
Although parents have best of intentions of trying CI implants for their Deaf children, I still feel it is ignorantly wrong.
Why? I have simple reasons, and these reasons are impossible to get around (or avoid):
1. I have heard legit stories about physical suffering after CI implants, facial contortions and other side affects due to several factors which I believe to be:
A. Surgery is not guaranteed 100% to be precisely perfect and without side affect or accidents, or are absent of complications. Anything can happen. Do you want to subject your dearest and most precious child over a remote possibility that something can go wrong? Is that how much you love your child?
B. Here is an example. Some people can stay underwater for up to 1-2 minutes, and others who are supremely fit can for 3 mins. Another example is, some people get sick more often than others, with a more suppressed immune system. Others can stand up on their two feet longer than others that need to sit down after extended periods of times.
My point here? NOT every child can withstand a major surgical procedure. Every skull and physical being is a bit different in comparision to the person sitting next to them. Why assume CI implants results are the same for everyone? And even if you don’t assume so, why do you outweigh the risks associated with undergoing major surgery in the quest of enabling your child to hear and speak the way you feel a CI implant will change ones’ life?
2.Naomi, don’t you for a moment feel that a very young child should have the privilege of deciding if they want their skull invaded by a surgical drill, if they want a piece of their skull to open? Do any of the “CI” parents ever consider that their child might want to decide later in life, without any pressure, without high hopes in the illusion that it would please the parents?
Naomi, I am glad I was born in 1965. Because, my parents might have subjected me to CI implantation without asking me. I am just fortunate. To this day, I don’t want one. I want digital hearing aids.
And, Naomi, considering the enormous cost of CIs, a hearing man came up to me today and mentioned that his buddy’s daughter had a CI implant, because of pressure from family, audiologists, professionals, and CI company representatives. The result? Thousands of dollars were spent, and she wore them for only 6 mos before stopping to use it, stuck with the surgical procedure for the rest of her life. The money could have been used to feed the poor or to purchase MANY digital hearing aids for the needy.
One story I heard about in Jack’s vlog “The Ugly Truth of CI,” I heard that the CI recipicient had vomiting episodes from severe headaches in the months (and years?) following the surgery. Since his wife gave account of what happened, I assume the vomiting episodes continued for years, while his wife had to drive him to the ER.
And for what? In the quest to hear better and to attain more accurate speech skills, simply.
Does any of these details disturb you to the least?
Do you understand what the word audism means, or do you think this term was coined by the Deaf cultural thinkers? Is this word a real word, or is it a word used to appease to Deaf people who feel that the system tries to cintrol them?
Is audism a word that was coined specifically for paranoid Deaf people who feel that the system fails them?
Or is audism a word that is more fanatical, extremist, and anti-hearing?
Or is audism a legit term? A legit problem?
Can you go back to the 1880 Milan Conference and study the consequences of the decision to clamp down on ASL and to promote oralism? Did you know that some Deaf people lost their jobs, some as writers, some in the medicinal field, some in the educational field, and other professions? Did you know that some were taken to asylums? I don’t have all the details to write down, but this is just an example of what may have happened to some Deaf individuals after that fateful 1880 Milan Conference.
And what CI parents are doing, if the 1880 Milan conference folks knew of the medical/technology advances that would happen today, is to prove them right and to look the other way in seeing Deaf people lose their professions and be taken away to asylums.
In other words, is that humane? I equate the 1880 Milan Conference to CI implantation that can have tragic results in some cases. I don’t think it is humane.
And, some care more about their dogs. Animal rights activists are more loud than the anti-CI people, I believe.
January 19th, 2008 at 10:43 am
YIKES - im reading these entries backward
from MZ most recent to this one now
i wonder if MZ can create a blog entry where folks can just discuss the perceived pros / cons of CI and also what type of research we want to see done and shared
i feel badly that i am feeling a need to respond to the comments more than the original stories being shared
aaron - i thank u for sharing your story and i am sorry for the pain you have experienced
re: folks tossing out terms anti-CI and audists - pls use with caution. name calling doesnt normally foster dialogue
none of us are black and white beings - we are complex
CIs are complex because:
1. their impact is relatively unknown
some experience great “success in speech, hearing, and English written/reading acquisition”
some do not
some experience physical side effects
some do not
some experience psychological / emotional effects
some do not
a few questions for the parents with kids with CI:
where are the dads??????
why is a support group still needed after the decision to implant is made and the CI is “successful”
to AARON - u r in my thoughts and prayers - be well
thanks
peace
p
January 19th, 2008 at 12:12 pm
To John Criters in #84:
“Audire” (”to hear” in Latin) is a word found in the Bible. Philosophers St. Augustine (354-430 A.D.) and St. Ignatius of Loyola (1491-1556) learned from the Bible that without “hearing” the Word of God, a person’s soul cannot be saved. Thus the word, “audire,” has become a buzzword for centuries.
The concern was spreading all over Europe and reached the Renmaissance Italy. Meanwhile, Mathematician-Physician Geroloma Cardona not only refuted the Bible thumbers concerning “audire” but also debunked Aristotle’s claim that deaf people were uneducable and incapable to reason and asked that — to reduce the burden of the government — deaf people be dumped in the woods. Cardano, who was a great friend of Masterpainter Leonardo da Vinci who had deaf friends, had proof that deaf people could do anything! He pointed at his deaf son who could read and write through not the ears but through the eyes.
Two centuries later, L’Abbé de lEpée proved how correct Cardano was after discovering a deaf teenager named Jean Massieu could think abstractly about God without able “audire” (to hear).
Today’s hearing people like AGB and his followers distort the concept of “audire” in the Bible. They interpret that being unable “to hear” is inferior to those who can hear. Thus some hearing people become audists. Deaf people who support audists’ theory are what I have coined (approved by Dr. Harlan Lane) a term: “Audists’ deaf protéges”. Audire, audism, audist.
January 19th, 2008 at 2:46 pm
Jean Boutcher:
I believe in the term audism, it is real. I wanted Naomi to think about how audism can affect a Deaf child’s life and cause the child to be manipulated physically just to be able to hear and be deemed able to think abstractly with speech skills. I believe parents or CI advocates feel that audism is just a term coined by us in defense of what they are doing.
Jean, it was an excellent comment by you and informative. I learned something.
January 22nd, 2008 at 10:59 am
to Ann_C:
It was an insult..and frankly, if you are Deaf/or a member of the hearing impaired Comunity, then YOU should have been insulted.
This is typical of the historical attitudes of hearing people towards the Deaf Communitry. Go asks any reputable historian in Deaf History.
Raphael J. St. Johns