Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 I believe this means they are " only " deaf no other problems. a Ellen and Steinbrick wrote: Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 --------------------------------- Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Hmm from what i know " vanilla deaf " means thats their only issue (deafness) Chantelle > Hi all, > This term has been used in reference to and I tried to look it up. > It seemed to be used in a derogatory way but I could not find a > definition. > What does " vanilla deaf " mean? > Thanks > Ellen mom to 9 > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 Ellen, I don't have anything but my own personal experience to base this on, but whenever I use " vanilla " as an adjective...I'm being sarcastic and using it to be " plain " or " boring. " (mom to Evan, 20 months, and anything but " vanilla " ) Ellen and Steinbrick wrote: Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 --------------------------------- Never miss an email again! Yahoo! Toolbar alerts you the instant new Mail arrives. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2007 Report Share Posted March 23, 2007 I agree. We (meaning me and my friends with kids with multiple disabilities along with deafness) use it. I use it when talking with my friends who only have " vanilla deaf " kids. It isn't necessarily a bad thing. I wish my son was Vanilla Deaf. He goes to a school that have kids with other issues and just deaf kids so the term always comes up. Debbie Matasker Re: Vanilla Deaf I believe this means they are " only " deaf no other problems. a Ellen and Steinbrick <esteinbrick@ <mailto:esteinbrick%40sbcglobal.net> sbcglobal.net> wrote: Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 --------------------------------- Finding fabulous fares is fun. Let Yahoo! FareChase search your favorite travel sites to find flight and hotel bargains. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Ellen, In our experience we have seen the words " vanilla deaf, used to designate that if someone were not 'vanilla deaf', (in other words without other health or learning issues), that they did not belong in a deaf program or deaf school or other deaf gathering/event. Are you saying that is being referred to as 'vanilla deaf' or that it is being said that he doesn't fit in with 'vanilla deaf''?. Health, learning, or behavior issues sometimes contribute to someone not being considered 'vanilla deaf'. It is a sadness to me that many who are not considered 'vanilla deaf' are excluded from many important kinds of activities. It further is a a complex puzzle to me that when so many deaf individuals throughout history have been discriminated against - that they would then turn around and discriminate against others. I understand the phenomena. I don't understand why it appears so large and impressive among many individuals who are deaf. I'm thinking of an example where the state I live in was bringing forth proposed changes to admissions standards at state schools for the deaf and for the blind. One individual who is active in one of the deaf schools stood up at a meeting with a sick look or her face and a disgusted tone to her voice exclaiming that " those children, who use picture communication, are ruining MY ASL, and should not be allowed in our school " . I don't quite understand her reference to " MY ASL " . The statement tore at my heart, of course, but does not deter me from finding ways that my daughter can access ASL. She is deaf and it is her right to have communication access. With or without pictures. :-) With or without augmentative assistance. :-) Language is so vitally connected to who we are and how we express ourselves. I think language is for all of us. Maybe I should re-state that sentence. I KNOW language is for all of us. Vanilla Deaf Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 , your statement about language is so very important. How can it be for some and not others?? I understand your statement about the feeling that " we " are not accepted and looked upon as less than. communication--no matter how it is expressed--is a beautiful thing and should be respected, used, understood, and felt for what it is--our connection to one another. I am SO with you in this fight. xo pam Re: Vanilla Deaf Ellen, In our experience we have seen the words " vanilla deaf, used to designate that if someone were not 'vanilla deaf', (in other words without other health or learning issues), that they did not belong in a deaf program or deaf school or other deaf gathering/event. Are you saying that is being referred to as 'vanilla deaf' or that it is being said that he doesn't fit in with 'vanilla deaf''?. Health, learning, or behavior issues sometimes contribute to someone not being considered 'vanilla deaf'. It is a sadness to me that many who are not considered 'vanilla deaf' are excluded from many important kinds of activities. It further is a a complex puzzle to me that when so many deaf individuals throughout history have been discriminated against - that they would then turn around and discriminate against others. I understand the phenomena. I don't understand why it appears so large and impressive among many individuals who are deaf. I'm thinking of an example where the state I live in was bringing forth proposed changes to admissions standards at state schools for the deaf and for the blind. One individual who is active in one of the deaf schools stood up at a meeting with a sick look or her face and a disgusted tone to her voice exclaiming that " those children, who use picture communication, are ruining MY ASL, and should not be allowed in our school " . I don't quite understand her reference to " MY ASL " . The statement tore at my heart, of course, but does not deter me from finding ways that my daughter can access ASL. She is deaf and it is her right to have communication access. With or without pictures. :-) With or without augmentative assistance. :-) Language is so vitally connected to who we are and how we express ourselves. I think language is for all of us. Maybe I should re-state that sentence. I KNOW language is for all of us. Vanilla Deaf Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 ****sigh**** one of 's elementary school teachers always dreamed of being a Deaf Ed instructor - it was all she thought of from early elementary school. Her dream came true - but she envisioned teaching a vibrant high academic functioning class in ASL to all " Vanilla " deaf students. It's never that way. She has three grade levels at a variety of levels of functioning. The logistics alone of planning lessons to such a great span of abilities in so many areas is daunting. She laments that it is all " too special ed " . She didn't want to be a special ed teacher. ( She was so excited - she wanted to provide a bi-bi environment - all ASL/all English - both languages, both cultures. Now I can see she feels special ed is appropriating parts of a culture and separating the language for other uses ..... and my dear friend the DHH pre-school/Kindergarten teacher - she loves the language, she loves the culture, she loves all children - she loves humanity. She has friends who are deaf. Her goal is only to support wholeness and growth in all her students - whatever it takes. it is heartbreaking. And the mainstreaming can break the connection down too, alone in a hearing world. is known by other students as " the guy who always has the adult with him " - even though his translator goes from class to class discreetly. Some of the Latin descent children, who have neither sign nor English at home are benefiting from a highly focused and supported individualized education, and are often alone as well.. Part of my worry and upset is I don't have a clue what the answer looks like, heck, I don't even know what the right questions are! What if this is what the answer looks like? It is what it is. Worry puts me in the future. Upset is an unmet expectation. I have an unknown unmet expectation in the future. I can become worried and upset. ***sigh*** I believe we each feel the need to belong, to be connected. I feel often thwarted and failing in my ability to support in feeling connected. Part of my frustration is the isolation experienced was not anticipated in his 13 years of special education - nine years under the DHH umbrella, his language needs were met and he had medical support, and there was a working assumption that he was part of a group because of the shared language, that his inability to demonstrate being part of the group was somehow linked to language. Four years under the umbrella of Special Ed the coordinator looked at as a whole person first, language only supplementing his learning - not providing his identity, and cared deeply and affirmed generously the sadness was feeling. oh my, affirm, affirm, affirm..... let no one diminish the other. The more I affirm their perspective, the more I am able to affirm my own. blessings and light upon us all. yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Lovely, Pam. Yes. You said it so well: " Communication -- no matter how it is expressed -- is a beautiful thing and should be respected, used, understood, and felt for what it is -- our connection to one another. " :-) Vanilla Deaf Hi all, This term has been used in reference to and I tried to look it up. It seemed to be used in a derogatory way but I could not find a definition. What does " vanilla deaf " mean? Thanks Ellen mom to 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Wonderful words to believe in and think on, Yuka. And, as always, they are beautifully stated. :-) blessings and light upon us all. yuka Recent Activity a.. 7New Members Visit Your Group Coolest Hair Have cool hair? Share and vote on Bix.com! Yahoo! TV Read Ivanka's Blog Stay updated on The Apprentice. Market Online Drive traffic to your web site with Sponsored Search. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 It is unfortunate that there are some with the perspective that other disabling conditions make for an inferior Deaf school/community. (Evidenced by some of 's comments about hers or others' experiences, and from our personal experiences.) It is also very shortsighted of them. Deaf Schools need to understand that as technology changes (both medical and assistive technology), there will be more and more individuals who do not fit into the " typical Deaf " mold. I have said this since was born! As medical advances are made, and infants survive more and more complex problems, the Deaf community will find there are many individuals coming into the world with needs additional to just a hearing loss. And those who utilize cochlear implants may still need ASL - you can't wear an implant when swimming, for example. I can understand that having been oppressed for so long the Deaf Community wants to remain strong and autonomous. But they also need to realize that things do change; there is a need to be accepting of individuals and adapt. It aggrevates me when Deaf exclude an individual with other disabilities because they are not " just Deaf " . Have they learned nothing about practicing acceptance, based on their collective memory of not being accepted themselves? And why do they force our kids into a predetermined " box " based on their perceptions of what that child might or might not be able to accomplish because they are not " just Deaf " ? Off the soapbox, now. Sorry! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Asperger's) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 I sooooo want to get on that soap box with ya but you said it all so well. Chantelle > It is unfortunate that there are some with the perspective that other > disabling conditions make for an inferior Deaf school/community. (Evidenced > by some of 's comments about hers or others' experiences, and from our > personal experiences.) It is also very shortsighted of them. Deaf Schools > need to understand that as technology changes (both medical and assistive > technology), there will be more and more individuals who do not fit into the > " typical Deaf " mold. I have said this since was born! As medical > advances are made, and infants survive more and more complex problems, the > Deaf community will find there are many individuals coming into the world > with needs additional to just a hearing loss. And those who utilize > cochlear implants may still need ASL - you can't wear an implant when > swimming, for example. I can understand that having been oppressed for so > long the Deaf Community wants to remain strong and autonomous. But they > also need to realize that things do change; there is a need to be accepting > of individuals and adapt. It aggrevates me when Deaf exclude an individual > with other disabilities because they are not " just Deaf " . Have they learned > nothing about practicing acceptance, based on their collective memory of not > being accepted themselves? And why do they force our kids into a > predetermined " box " based on their perceptions of what that child might or > might not be able to accomplish because they are not " just Deaf " ? > > Off the soapbox, now. Sorry! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Asperger's) > > Wife of Rick > > oganm@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Casey, Patty applied to Galludet and wasn't accepted because they said she had too many disabilities to appropriately serve her. Although Patty is totally finding her life in the deaf world it isn't all wonderful. Nothing is. Our children do not fit anywhere really. But they shouldn't have to. It's up to us as parents and family to point out to each other the bad so other children do not have to go down those hard dark roads. We also must point out the good so that our children's roads may be paved a bit here and there. Patty is fitting in to the deaf world as she is. She's being totally embraced by all. She has joy again. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Wasn't it here not too long ago that some higher up at Galludet was in something about the students wanting her to be fired because she wasn't " deaf enough " ? Casey ________________________________________________________________________________\ ____ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 excellent point! ~yuka Re: Vanilla Deaf Wasn't it here not too long ago that some higher up at Galludet was in something about the students wanting her to be fired because she wasn't " deaf enough " ? Casey __________________________________________________________ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2007 Report Share Posted March 24, 2007 Casey, it was the latest uprising there about the replacement for I.King Jordan who is retiring. When he was picked, there was a riot because the first pick was a hearing woman. The students rebelled-- " Deaf President Now " --and she ( Zinzer) stepped down. King came in. He was born hearing and became deaf at21 in a motorcycle accident. Fast forward 15 (?) years and King announces his retirement, the Board picks, rats! I can't remember her name!. Anyway, the Board picked a woman who has taught and been an administrator at Gallaudet, she was born deaf but developed speech. She had a reputation at Gallaudet, among the students, as being strict.. So....when it was announced the students, a new generation of them, carried on saying she was not deaf enough--she was born deaf!!!!!. pam Re: Vanilla Deaf excellent point! ~yuka Re: Vanilla Deaf Wasn't it here not too long ago that some higher up at Galludet was in something about the students wanting her to be fired because she wasn't " deaf enough " ? Casey __________________________________________________________ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Pam, Makes ya wonder just what " deaf enough " is.. My son is not " deaf enough " because he has some hearing in his right ear (moderate loss) and speaks (though to strangers is hard to understand), my daughter is not " deaf enough " because she was born hearing and lost it in her right ear at age 8 due to a mastiod operation and has a moderate loss in her other ear which is getting worse. Even here in this lil county there is a very active Deaf population that really doesn't want to have a thing to do with my kids. Well I and my kids say " To heck with them ! " Casey ________________________________________________________________________________\ ____ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 I too have felt that Kennedy is not accepted at the " deaf " functions - they will take right to the kids who are " just deaf " but Kennedy speaks orally and uses sign for clarification receptively (though around other deaf kids she will sign). I've never felt like we really truly " fit in " there. www.chargesyndrome.info > > Pam, > > Makes ya wonder just what " deaf enough " is.. My son is not " deaf enough " > because he has some hearing in his right ear (moderate loss) and speaks > (though to strangers is hard to understand), my daughter is not " deaf > enough " because she was born hearing and lost it in her right ear at age 8 > due to a mastiod operation and has a moderate loss in her other ear which is > getting worse. Even here in this lil county there is a very active Deaf > population that really doesn't want to have a thing to do with my kids. Well > I and my kids say " To heck with them ! " > > Casey > > __________________________________________________________ > Bored stiff? Loosen up... > Download and play hundreds of games for free on Yahoo! Games. > http://games.yahoo.com/games/front > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 ..... college students being what they are ... I have learned from several sources (deaf and hearing) that the deaf population at CSUN are overwhelmingly hearing/voice antagonistic. They do not wear their hearing aids, and do not mix with speaking students. They are known for being indifferent or rude to notetakers. I have great apprehensions about sending to a school where the administration feels his needs are met by the NCOD while his experience will be to be an outcast among a minority....... it is not as though he will have the time or attention to do more than learn while in class - there is no incidental, social or residual listening to the background. He takes his own notes, attends to the interpreter, the face, body and voice of the teacher and the FM System. Additionally, the FM system is positionally sensitive, so to find the physical posture where his FM system receives clearly, he can still see the interpreter and the teacher and the board, he can still see his desk to write notes or look at text AND the collar on his back brace is not strangling him is a full time occupation. I know it is not in their power to make this any easier for . But it does break my heart that they unknowingly make it harder and lonelier..... ***sigh*** yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Dear Yuka I understand your sadness behind this statement " laments that it is all " too special ed " . I wish that people, in general, could all see that ALL education is special. I have nothing more to add to your post--it is poignant and heartfelt, as usual! xo pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Marilyn, amen. pam Re: Vanilla Deaf ****sigh**** one of 's elementary school teachers always dreamed of being a Deaf Ed instructor - it was all she thought of from early elementary school. Her dream came true - but she envisioned teaching a vibrant high academic functioning class in ASL to all " Vanilla " deaf students. It's never that way. She has three grade levels at a variety of levels of functioning. The logistics alone of planning lessons to such a great span of abilities in so many areas is daunting. She laments that it is all " too special ed " . She didn't want to be a special ed teacher. ( She was so excited - she wanted to provide a bi-bi environment - all ASL/all English - both languages, both cultures. Now I can see she feels special ed is appropriating parts of a culture and separating the language for other uses ..... and my dear friend the DHH pre-school/Kindergarten teacher - she loves the language, she loves the culture, she loves all children - she loves humanity. She has friends who are deaf. Her goal is only to support wholeness and growth in all her students - whatever it takes. it is heartbreaking. And the mainstreaming can break the connection down too, alone in a hearing world. is known by other students as " the guy who always has the adult with him " - even though his translator goes from class to class discreetly. Some of the Latin descent children, who have neither sign nor English at home are benefiting from a highly focused and supported individualized education, and are often alone as well.. Part of my worry and upset is I don't have a clue what the answer looks like, heck, I don't even know what the right questions are! What if this is what the answer looks like? It is what it is. Worry puts me in the future. Upset is an unmet expectation. I have an unknown unmet expectation in the future. I can become worried and upset. ***sigh*** I believe we each feel the need to belong, to be connected. I feel often thwarted and failing in my ability to support in feeling connected. Part of my frustration is the isolation experienced was not anticipated in his 13 years of special education - nine years under the DHH umbrella, his language needs were met and he had medical support, and there was a working assumption that he was part of a group because of the shared language, that his inability to demonstrate being part of the group was somehow linked to language. Four years under the umbrella of Special Ed the coordinator looked at as a whole person first, language only supplementing his learning - not providing his identity, and cared deeply and affirmed generously the sadness was feeling. oh my, affirm, affirm, affirm..... let no one diminish the other. The more I affirm their perspective, the more I am able to affirm my own. blessings and light upon us all. yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Dear Yuka, Your post so clearly and painfully illustrates why the " deaf' wars " , as I refer to them, are so damaging. The controversial nature of all the viewpoints, with no common point of respect for all, leaves many students caught somewhere in the middle and alientated from so many. Of course we know that , with all his strengths, will do wonderfullly during his college years and beyond. Thankfully he has been accepted at Cal Lutheran so his experience is likely to be much more positive in terms of acceptance and in terms of accommodations that are worthwhile for him than if he were to attend CSUN at this juncture. The smaller community is likely to encourage and value him as an individual. And, the message you shared with us from his acceptance letter underlines the nature of the university's attitudes: " Congratulations! Our admissions committee has reviewed your application for admission and would like to invite you to become a member of the class of 2011. This offer of admission demonstrates our confidence that you will successfully meet the academic challenges at California Lutheran University. We recognize the hard work that has contributed to your educational and personal achievements so far, and we value the promising contribution you will make here at CLU. In recognition of your outstanding scholastic achievement and your contribution to school and community, you have been awarded an academic scholarship in the amount of $10,000. This award reflects the University's faith in your potential both as a CLU student and a contributor to the CLU community. The scholarship amount will be included as part of your award of financial aid during each of your four years at CLU. " This good news bears repeating!! But, why should the narrow perspective at CSUN prevent some students from accessing their voices if they so wish? And is there a benefit to the deaf students, who do not speak, in remaining distant from others in the University community? We all benefit from the explorations and sharing of unique, compelling and creative ideas. Our former neighbor, who was the first deaf individual to earn a Ph.D. degree at UCLA, often told us that he, and he felt most other deaf individuals who used their voice, truly valued that capability. He was fully enmeshed in the deaf community and a proficient signer of both ASL and signed English. However, he used his voice in some instances and fully enjoyed participation in the hearing world and the deaf world. He often created opportunities where the two joined together. He was Kendra's tutor for many years. The sadness to me is that the controversies only seem to deepen and prolong the difficulties that deaf students experience. I think that the lack of respect contributes to the ultimate relatively low achievement level of many (vanilla) deaf students. There is no reason for this to be the case. I love to imagine the strides that could be made if the energy that continues the negativity in this arena could be harnessed in a positive way. It would be exceptional for all deaf students, either for those who are typical, or for those with special needs. Mom to Kendra, and Camille Re: Vanilla Deaf .... college students being what they are ... I have learned from several sources (deaf and hearing) that the deaf population at CSUN are overwhelmingly hearing/voice antagonistic. They do not wear their hearing aids, and do not mix with speaking students. They are known for being indifferent or rude to notetakers. I have great apprehensions about sending to a school where the administration feels his needs are met by the NCOD while his experience will be to be an outcast among a minority....... it is not as though he will have the time or attention to do more than learn while in class - there is no incidental, social or residual listening to the background. He takes his own notes, attends to the interpreter, the face, body and voice of the teacher and the FM System. Additionally, the FM system is positionally sensitive, so to find the physical posture where his FM system receives clearly, he can still see the interpreter and the teacher and the board, he can still see his desk to write notes or look at text AND the collar on his back brace is not strangling him is a full time occupation. I know it is not in their power to make this any easier for . But it does break my heart that they unknowingly make it harder and lonelier..... ***sigh*** yuka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 Casey, we see it here, too. It was not always like this--I do remember a very mixed deaf community with a place and respect for signing/speaking/and/or gesturing people. I was part of it (as an intrepreter) and I feel sad and mad about the changes. Here in MA, the same thing has happened in the deaf community. There was aplace for ALL deafblind people, but now if you are deafblind as a result of Usher syndrome, you are guaranteed but the Rubella group has been pushed out--I fear for the CHARGE folks. I was recently at a Town Hall meeting for the deafblind commnunity and spoke up about just this--I have db friends who were founding members of this group and they have been pushed aside and not included in many activities. It makes me crazy (as a person who was around at it's formal inception and as a person). So..a funny thing happened, I found my loud voice and spoke about this. to my surprise and thrill, it was greeted by great agreement--outside of the Usher group--and we now may be on a path toward fixing this. This is not to say I changed this, but I opened it (with fear of reprisal, I might add) and others then also felt brave enough to speak up. So....I guess my point is, we must note what we see and hope that there will be others behind us. I am sorry to hear your children are experiencing this--The not deaf enough thing is sickening to me. And you werre right the other day when you said you wondered how those folks who were not accepted because they were deaf can now do this to others??? pam Re: Vanilla Deaf Pam, Makes ya wonder just what " deaf enough " is.. My son is not " deaf enough " because he has some hearing in his right ear (moderate loss) and speaks (though to strangers is hard to understand), my daughter is not " deaf enough " because she was born hearing and lost it in her right ear at age 8 due to a mastiod operation and has a moderate loss in her other ear which is getting worse. Even here in this lil county there is a very active Deaf population that really doesn't want to have a thing to do with my kids. Well I and my kids say " To heck with them ! " Casey ________________________________________________________________________________\ ____ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2007 Report Share Posted March 25, 2007 So true about Pam, so true about Patty, so true about life. God be gracious unto us, and give us peace. in Ma. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2007 Report Share Posted March 26, 2007 Pam, How lucky people are to have you and your brave voice. It must have been hard to begin speaking but I am glad you opened the way for others. Things need to change. We've been talking about our children not fitting into the deaf world. That's hopefully changing with people like Patty coming along. Many of the people Patty is connected with do have Ushers. Thankfully they accept Patty. Some truly deaf people even use their voice at these parties so that Patty can understand them better. So far Patty has not felt uncomfortable at all within this deaf community. She's felt accepted and included. This entire conversation is emotional for me reading about the " not deaf enough. " We've always found that Patty doesn't fit anywhere. She sure as heck didn't fit in within our towns regular education. Thank goodness there were a few kids Patty could find a way with. Thank goodness she made it through. In truth Patty's always been... not deaf enough but too hearing impaired, not blind enough but too visually impaired, not ...enough but too... That's been Patty's entire life. Hers would have been much easier if she was just ----enough. The incredibly sad part is that Patty is truly deaf blind. People can't comprehend that because she modifies so well it appears she hears and sees better than she does. We've tried to help people realize that all her life. I thought with that " label " she would finally be accepted within that world. That hasn't been the case. I think much of it is because CHARGE is unique and Patty is one of the oldest so understanding just isn't there. For those who know deafblind when it comes to CHARGE there ever so much more. It has been surprising to me and very sad that she has had little support or connections within that community. Actually it is usually through those connections where she is least understood, except for Perkins of course. In the end she's not deaf blind enough or is too deafblind. There hasn't been a deafblind community for her. She is beginning but it's been such a long time. Yes there are still some vanilla deaf that do not accept others. But there defiantly are those within the deafblind world that do not accept the uniqueness of Patty. There's much more than deafblind within CHARGE. It's the nuances that keep Patty on the outside. It's also what has made herr entire life hard. But it's also what made her strong. We all sould live in a nice world but that isn't a true world. We need to teach others. We then must expect others to learn. If they don't we move on. If they do then they can turn it around to continue on and teach others. Patty is finding herself in the deaf world. It's now we need to begin to open the deafblind world for others to understand CHARGE! Life is still hard but life sure is still good. lBonnie, mom to Kris 24, Patty CHARGE 22, and wiffe to Re: Vanilla Deaf Pam, Makes ya wonder just what " deaf enough " is.. My son is not " deaf enough " because he has some hearing in his right ear (moderate loss) and speaks (though to strangers is hard to understand), my daughter is not " deaf enough " because she was born hearing and lost it in her right ear at age 8 due to a mastiod operation and has a moderate loss in her other ear which is getting worse. Even here in this lil county there is a very active Deaf population that really doesn't want to have a thing to do with my kids. Well I and my kids say " To heck with them ! " Casey __________________________________________________________ Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. http://games.yahoo.com/games/front Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.