Posted by: Mary Bifaro ®
09/07/2005, 14:27:52
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Dear "Snowie",I too feel so fortunate that the NSDA sponsors this bulletin board. All of us experience rude comments from time to time from people not understanding why we sound like we do. When you were describing how you speak slowly, you reminded me of Diane Rehm. She is an Honorary Director of the NSDA, an NPR radio broadcaster for many years, and the author of "Finding My Voice". She speaks slowly in order to enunciate and be better understood. It is quite effective for her in her work.
Hang in there, "Snowie". Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
Modified by Mary Bifaro at Wed, Sep 07, 2005, 14:29:49
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Posted by: Anne Brett ®
09/07/2005, 15:18:42
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Snowie, you aren't alone in experiencing this reaction from someone who is on the 'other end of the phone' or worse yet, from one you are attempting to speak to 'in person'. This happens to me the majority of the time if I'm speaking to someone I don't know or someone I've not talked with on the telephone before. They automatically 'assume' I'm deaf, retarded, mentally challenged - whatever definition you care to think of. Sometimes, if I'm trying to contact a business for the first time, the answerer of the phone 'assumes' it's an obscene phone call and they immediately hang up. I've decided it just goes along with having and dealing with the many frustrations of this voice disorder called spasmodic dysphonia.So, I empathize with you and can assure you you're not alone with this 'been there, done that' experience. Hang in there. Anne
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Posted by: Paula B. ®
09/07/2005, 17:00:50
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Hi Snowie,Wow, you hit a nerve. Honestly, I can go on and on, and right pages about this, but I'll spare you all. :) Most people in this society, I believe, worry about themself. Am I too fat? Is my makeup on wrong? Why are they looking at me? What did they mean by that? Are they making fun of me? Why are they looking at me like that? What did I do? Why are they laughing at me? or with me? :) Some people are concerned about others, and show it too. By asking if you are sick? If you are okay? or even wondering about you, like, Is that person slow, normal, or extremely amazing and smart? :) Then there are people who have nothing better to do than to judge others. They actually have to look for your faults, and then tell everyone about them, so as to make themself feel better, sometimes at your expense. Now, if you realize this, you can learn and grow from the ignorance of others, or, let it bother you. Sometimes it's imposible to avoid situations or feelings, but you and everybody can move on. We, as people with SD, and even as humans try to be as normal as we can be. The entire world is not in our shoes, so they can't understand certain things. I hope that I made my point. :) Thanks for reading, Paula (Chicago,IL)
ADSD
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Posted by: Samietooo ®
09/09/2005, 07:20:46
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Hi Snowie. First I want to say that I applaud you for being on 'duty' and answering the phone calls! I know many people with SD who wouldn't do that kind of job and it takes one heck of a person, in my eyes, to do it!! I am very proud of you and I'm sure there are many others who wish they had the confidence to do that. Please don't let any of the ignorant people out there take that away from you!I, too, have had people look at me as though I'm stupid, or deaf or whatever else. It does hurt. I realize too that even if I had a 'perfect' voice, there are going to be people who like me and those who don't and it's the same way with everyone else. Keep up the good work and if you didn't 'hear' me the first time, I want to say again, "I applaud you!!!" Carol
(Florida)
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Posted by: grannijudi ®
09/09/2005, 10:41:58
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I imagine we have all had the same problem to one degree or another. Usually, at least for me, it comes from people I don't know. People who know me are just very supportive that I can talk at all! The one instance I remember vividly involved a social worker who was in charge of getting me an amplified phone. She treated me like I had no sense at all--she thought I would be unable to write to fill out the application! In my very limited way I tried to tell her that I could write, just couldn't talk. I left the office crying and promised myself I would never let that happen again. She was the one with the problem and I let myself take the blame, but I did learn a lesson. Yes, I'm much more supportive of those with handicaps than I used to be--that's a good thing! grannijudi
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Posted by: Lulamadden ®
09/09/2005, 11:02:58
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For me I just find people are just impatient, they don't want to wait for you to get the words to come out. I most just try to ignore them and take pride in knowing that I am very good at my job. The doctors that I work for are very understanding and if someone mentions it to them they just blow it off like its no big deal. I am curious though about what type of amplifed phone you received? My job is trying to help me get one and I don't know where to begin. Any sugguestions would be greatly appreciated. Thanks -
Lula
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Posted by: snowie ®
09/12/2005, 03:44:44
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Hi Lula,Thanks for you response, it's good to know that we can share our experiences here, and people understand .... Re: amplified phones, I have just had an assessmentt for one by 'Access to work' here in UK, which is a Government iniative to help people to get the support/equipment they need to stay in work.
I think it's a bit like your ADA (I'm guessing you are in the USA), that I have seen mentioned on this board. I have Ab Sd and they have recommended the following equipement:
Echo personal voice amplifier (latest model) with a lapel microphone, and a Platonics A22 amplifier with volume/control for outgoing voice. If you do a internet search you'll probably got more info about these and other types of amplifiers on the net. Good luck to you, I have the names and addresses of the two companies that supply these if you want more info. Best wishes, Snowie
Modified by snowie at Mon, Sep 12, 2005, 03:48:31
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Posted by: Lulamadden ®
09/12/2005, 11:28:43
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Hi Snowie -Yes, I do live in the USA, Sacramento, CA. Thanks for the info, I will be looking into it for sure. I work for a large University Hospital so there are plenty of resources around to use, which my department is working on. Your right about the this bb, it is nice to know that other people understand what you are going through. I just have to remember to keep a light heart about it all and not take it too seriously even though it can be hard sometimes. Take care - Lula
Mixed SD
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Posted by: grannijudi ®
09/12/2005, 12:02:47
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Oops--sorry--I meant Lula, not Lulu! grannijudi
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Posted by: kim ®
09/11/2005, 19:09:02
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Hi Snowie,I experience this a lot where I work too. I'm the receptionist, and some people do say mean things about my voice too. I try as hard as can, but people (patients) just do not have any understanding of our voice condition (not yet anyway). But I've worked there for over 6 years now, and I would say, over 80 percent of our patients are very understanding and I love all of our patients, and the doctor and his wife and the employees who work there too. Hopefully the word will get out and we will not have an unknown condition any longer, thats just what I wish and hope for, for all of of us. I really wish our voice condition was more well known to the public, I really believe that this will happen soon. We just all have to stay together and stay strong and find someway to get this voice condition OUT IN TO THE OPEN. It is so hard, a day to day struggle, dealling with our voice disorder, to me, is like having a second job. I am so much into research, the cause, and the cure. I want to fight to get my voice back. Like you, I am much more aware of other people's disabilites. So much of the time when I see other patients and what they go through, I think, in a way I am lucky. So there in itself is something to be learned. Best wishes to you Snowie, Stay strong. No matter what. OK? And we all will stay strong and fight this battle together the end, no matter what it takes. That's just the way I feel, I'm starting to feel stronger. Kim/Houston AB SD
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Posted by: snowie ®
09/12/2005, 03:47:08
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Thank you All for your considerate and thoughtful responses, they were much appreciated. It's good to know people understand and that we have this board to be able to share our experiences,
and give information and support to each other.Thank you,
Snowie
Ab Sd, London, UK
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Posted by: grannijudi ®
09/12/2005, 12:00:01
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Hi, Lulu from grannijudi. My brand of telephone is Ameriphone XL 25. It is a speech amplified telephone which came from the Department of Assistive and Rehabilitative Services/Division for Deaf and Hard of Hearing Services in Austin, Texas. I no longer have the catalog of the equipment (the Chattervox, which is an amplifier you wear around your waist, was also in the same catalog). I feel certain you could get the info from your state Public Utilities Commission. If not, you might contact the people in Austin at (512) 407 3250--that's our state's telecommunications assistance program number. As I remember, the phone was around $100 and paid for by the state of TX. Hope this helps.
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Posted by: Lulamadden ®
09/12/2005, 12:22:49
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Thank you grannijudi - I will forward this inforamation onto my boss here at work. I really do appreciate it.Lula
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Posted by: Carole ®
09/22/2005, 21:37:31
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Snowie, people can be very stupid, in my opinion. Just today I was wondering if people have any idea how blessed they are to be able to speak without even thinking about it. It's like the old saying, you don't pay any attention to something till it hurts and then all of a sudden you are always hitting it.I never thought about my voice when I didn't have trouble. It doesn make you more compassionate to others with disabilities.
Everyone just asks me what is wrong with my voice or if I have laryngitis. Hang in there. Can't say it gets better, but what choice do we have. I have had SP for 25 years.
Carole in Texas
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Posted by: kim ®
09/23/2005, 15:50:30
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Hi Carol,I know what you mean. I never used to think about speaking, it just came naturally. Now I'm constantly aware of how my voice sounds, and the condition seems to "feed on itself", I guess, its hard to express the way the more I try to talk, the harder it is, but on the rare occasions when I'm not thinking about my voice, it sounds better. SD is so confusing. I agree with you totally on how it makes me much more compassionate for other people with disabilities, and many are so much worse than this. People always ask me too if I'm sick, do I have laryngitis, etc? And then when they call back later, they say, "you still have laryngitis, what's going on with your voice"?. To some people I say that I have dystonia of the vocal cords (they do not know what that is, though), and to others I say, yes I still have laryngitis and I don't know what happened to my voice. Its a battle for sure, but whe have to count our blessings, just like you mentioned. Kim/Houston/AB SD 20+ years, worsened considerably over the past 3 to 4 yrs. Take care everyone.
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