Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 Just my two cents.. Your mileage may vary, tax and tags extra I contacted the local SHHH, probably about 2 years ago. While the rep I corresponded with was very polite, I was told that the local SHHH chapter was composed of late deafened people, they used FM loops for communication and the rep was afraid that I would not fit in, nor did they offer CART for their meetings, so I would be largely lost. This may not be representative of things as a whole, but it was my experience. Pete Re: SHHH Involvement I will wait and see if and when you become totally deaf, your feelings are the same. I have been where you are; attended SHHH meetings at that time, and since I am totally deaf. BIG difference. I am NOT, and I tried to make that clear, am NOT putting SHHH down. You don't seem to understand that there is NOTHING that will help. I utilize all the methods of communicating that you mentioned, except for assistive devices, which do NOT work at all--I hope you never get the chance to find out. Again, I think SHHH is a fine organization, and they do good work. I also think that the fact that you are active in the organization, established, and have a social network established, Is wise. It is very different from walking into a group new when you are totally deaf. Just MHO. Marie Dear Marie, I do understand that you are not putting SHHH down, but I also think that you do not understand that there are ways to communicate even if you are totally deaf. You seem to over look speech reading and sign language. SHHH promotes that type of understanding of communication just as much as ALDs. I may not be TOTALLY deaf, but I am just a small step away from it and I find that ATTITUDE is everything. You need to accept the position you are in and learn different ways to deal with it. You need to develop a social network that is compatible with you level of hearing or deafness, how ever you want to look at it. SHHH can help you do that if you give it a chance. From SHHH, I understand that there are lots of things that will help, and I understand that from the folks with whom I socialize, thanks to SHHH, who are TOTALLY deaf and have been that way since birth. Where there is a will there is a way!! Just MHO. Best Regards, RAK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 Randy, I think Marie was just pointing out that it is not as easy to do a lot this for everyone that becomes completely deafened, and that as a completely deafened individual, SHHH did not meet her needs.... just sharing her experience like you were sharing yours. Both are VALID experiences, are informative and supportive in a group like this. Marie has always been for whatever works.... She is very active in a number of organizations to advocate on behalf of our interests (similar to your efforts for the hoh such far). I think you both are great for your efforts. Marie gets a LOT done too.... I think Marie is saying that you were successful with the process of creating networks prior to becoming deaf, but a lot of people with NF2 find themselves deaf rapidly, without the benefit of having connections to resources established... and that is a different starting point that did not allow SHHH to be as valuable to her as it has been for you. Access is everything and Marie is out there gaining access to a lot of information and support, but still realizes how much work it really is. I do fairly well in my life as far as communication is concerned using the resources I have, but I also realize that everyone else lives within different circumstances, and do not assume it is a matter of attitude for everyone. Attitude is a lot of it for some of us, but it is not everything for everybody. That's just my opinion, of course. Glad you joined the Crew! I enjoy and relate to your perspective based on my experiences (although I have not been active in SHHH....). I think the Crew is a great place to sort through a lot of this for ourselves (I know I used it that way for me at first.... like I lived through the stuff and then I needed to process it to see what it means for now and my future.) Take Care and please give people the benefit of the doubt... we're all in this together! Hugs, Randy Kirsch wrote: > Date: Wed, 15 Jan 2003 14:45:38 -0500 > > Subject: Re: SHHH Involvement > > I will wait and see if and when you become totally deaf, your feelings > are the same. I have been where you are; attended SHHH meetings at that > time, and since I am totally deaf. BIG difference. I am NOT, and I > tried to make that clear, am NOT putting SHHH down. You don't seem to > understand that there is NOTHING that will help. I utilize all the > methods of communicating that you mentioned, except for assistive > devices, which do NOT work at all--I hope you never get the chance to > find out. Again, I think SHHH is a fine organization, and they do good > work. I also think that the fact that you are active in the > organization, established, and have a social network established, Is > wise. It is very different from walking into a group new when you are > totally deaf. Just MHO. Marie > > Dear Marie, I do understand that you are not putting SHHH down, but I > also think that you do not understand that there are ways to communicate > even if you are totally deaf. You seem to over look speech reading and > sign language. SHHH promotes that type of understanding of > communication just as much as ALDs. I may not be TOTALLY deaf, but I am > just a small step away from it and I find that ATTITUDE is everything. > You need to accept the position you are in and learn different ways to > deal with it. You need to develop a social network that is compatible > with you level of hearing or deafness, how ever you want to look at it. > SHHH can help you do that if you give it a chance. From SHHH, I > understand that there are lots of things that will help, and I > understand that from the folks with whom I socialize, thanks to SHHH, > who are TOTALLY deaf and have been that way since birth. Where there is > a will there is a way!! Just MHO. Best Regards, RAK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 oh those SHHH folks are great, gotta lovethem. for the most part they are over 65 here and hoh, not fully deaf, and for the most part they do not sign. however, a tampa shhh group here has gotten better, they provide CART at meetigs and a few of our ALDA members gio to shhh too so its a mix. its worth a try to meet them, if you dont fit in dont go back. Brayman wrote: > Just my two cents.. Your mileage may vary, tax and tags extra > > I contacted the local SHHH, probably about 2 years ago. While the rep I > corresponded with was very polite, I was told that the local SHHH chapter > was composed of late deafened people, they used FM loops for communication > and the rep was afraid that I would not fit in, nor did they offer CART for > their meetings, so I would be largely lost. > > This may not be representative of things as a whole, but it was my > experience. > > Pete > > Re: SHHH Involvement > > I will wait and see if and when you become totally deaf, your feelings > are the same. I have been where you are; attended SHHH meetings at that > time, and since I am totally deaf. BIG difference. I am NOT, and I > tried to make that clear, am NOT putting SHHH down. You don't seem to > understand that there is NOTHING that will help. I utilize all the > methods of communicating that you mentioned, except for assistive > devices, which do NOT work at all--I hope you never get the chance to > find out. Again, I think SHHH is a fine organization, and they do good > work. I also think that the fact that you are active in the > organization, established, and have a social network established, Is > wise. It is very different from walking into a group new when you are > totally deaf. Just MHO. Marie > > Dear Marie, I do understand that you are not putting SHHH down, but I > also think that you do not understand that there are ways to communicate > even if you are totally deaf. You seem to over look speech reading and > sign language. SHHH promotes that type of understanding of > communication just as much as ALDs. I may not be TOTALLY deaf, but I am > just a small step away from it and I find that ATTITUDE is everything. > You need to accept the position you are in and learn different ways to > deal with it. You need to develop a social network that is compatible > with you level of hearing or deafness, how ever you want to look at it. > SHHH can help you do that if you give it a chance. From SHHH, I > understand that there are lots of things that will help, and I > understand that from the folks with whom I socialize, thanks to SHHH, > who are TOTALLY deaf and have been that way since birth. Where there is > a will there is a way!! Just MHO. Best Regards, RAK > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 With all due respect, I don't think attitude is my problem. And speech reading is how I get by; none of my family or friends sign, and I read sign very poorly, although I have continued to take classes and study sign. I travel extensively, alone. I am active on the board of NF Inc. and recently served on the CDMRP to appropriate the money allotted to NF research. I have set up NF programs at ALDA meetings. In other words, I am not a shrinking violet. IF I know only one thing, it is that we are all different; we have different surgical outcomes, even with the same doctor and the same procedure. And perhaps you will have no problem adjusting to deafness. I read your reply to the lady about your having had radiosurgery, and thinking you should have had microsurgery. Funny, I had microsurgery, and think I should have had radiosurgery!! LOL Marie Re: SHHH Involvement > > I will wait and see if and when you become totally deaf, your feelings > are the same. I have been where you are; attended SHHH meetings at that > time, and since I am totally deaf. BIG difference. I am NOT, and I > tried to make that clear, am NOT putting SHHH down. You don't seem to > understand that there is NOTHING that will help. I utilize all the > methods of communicating that you mentioned, except for assistive > devices, which do NOT work at all--I hope you never get the chance to > find out. Again, I think SHHH is a fine organization, and they do good > work. I also think that the fact that you are active in the > organization, established, and have a social network established, Is > wise. It is very different from walking into a group new when you are > totally deaf. Just MHO. Marie > > > Dear Marie, I do understand that you are not putting SHHH down, but I > also think that you do not understand that there are ways to communicate > even if you are totally deaf. You seem to over look speech reading and > sign language. SHHH promotes that type of understanding of > communication just as much as ALDs. I may not be TOTALLY deaf, but I am > just a small step away from it and I find that ATTITUDE is everything. > You need to accept the position you are in and learn different ways to > deal with it. You need to develop a social network that is compatible > with you level of hearing or deafness, how ever you want to look at it. > SHHH can help you do that if you give it a chance. From SHHH, I > understand that there are lots of things that will help, and I > understand that from the folks with whom I socialize, thanks to SHHH, > who are TOTALLY deaf and have been that way since birth. Where there is > a will there is a way!! Just MHO. Best Regards, RAK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 Hey Randy Just to change the subject slightly. What countries do they have these groups in - I have never heard of this type of group in New Zealand. in NZ Re: SHHH Involvement > > I will wait and see if and when you become totally deaf, your feelings > are the same. I have been where you are; attended SHHH meetings at that > time, and since I am totally deaf. BIG difference. I am NOT, and I > tried to make that clear, am NOT putting SHHH down. You don't seem to > understand that there is NOTHING that will help. I utilize all the > methods of communicating that you mentioned, except for assistive > devices, which do NOT work at all--I hope you never get the chance to > find out. Again, I think SHHH is a fine organization, and they do good > work. I also think that the fact that you are active in the > organization, established, and have a social network established, Is > wise. It is very different from walking into a group new when you are > totally deaf. Just MHO. Marie > > > Dear Marie, I do understand that you are not putting SHHH down, but I > also think that you do not understand that there are ways to communicate > even if you are totally deaf. You seem to over look speech reading and > sign language. SHHH promotes that type of understanding of > communication just as much as ALDs. I may not be TOTALLY deaf, but I am > just a small step away from it and I find that ATTITUDE is everything. > You need to accept the position you are in and learn different ways to > deal with it. You need to develop a social network that is compatible > with you level of hearing or deafness, how ever you want to look at it. > SHHH can help you do that if you give it a chance. From SHHH, I > understand that there are lots of things that will help, and I > understand that from the folks with whom I socialize, thanks to SHHH, > who are TOTALLY deaf and have been that way since birth. Where there is > a will there is a way!! Just MHO. Best Regards, RAK > > > 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.