Posted by: teach1 ®
07/24/2004, 10:03:19
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Kim, I'm sorry you had to go that horrible experience.. my voice doesn't sound different, i just simply have no voice for 5-10 seconds, so i often get the 'hello, hello, are you still there???" while i am struggling to get a word out. It is embarassing, and people like that make it worse for us to deal with. It's sad that there are so many rude people in the world, i suppose it takes all kinds...it's good you had co-workers who could be there for you.I wrote a while back about an experience I had at a local clothing store( a fairly expensive one too!), my eyes (BEB) and face went into a spasm, i had on sunglasses,as i always do, to try to hide a bit of it, but she looked at me,and burst out laughing, right in my face!! I was so stunned, as i am used to stares, but have never been laughed at in my face, i simply walked out.. i was so devastated i couldn't even talk about it to my husband for 1/2 hour as i knew i would cry. Well, i called the head office, long distance, and told the personal officer what happened, i did not want that specific girl to get in trouble,i didn't even know her name, she was young; but i did talk to her about educating new staff about people with disbilities, and how important it is to be more accepting of differences. She was horrified that it had happened, apologized, and asked if there was anything she could do for me.. well, stupid me, didn't think quick enough, i said,no thank-you, but should have said "Yes, a $100 gift certificate would do nicely, thank you!!" ah, well... at least i got the message across. You are right tho, people like that do not deserve us wasting our energy being upset, tho of course it definately hurts..hope you feel better soon, and yes, this is a great place to vent when things like that happen, we can all relate!! teach1
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Posted by: Brian ®
08/13/2004, 11:47:32
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I know people can seem very rude and even mean to us but imagine if the tables were turned and we were the healthy ones. This young woman saw someone she probably thought was normal and then you pulled a face that was totally unexpected. She probably did think it was funny because it was so unexpected, had you come into the store with an obvious disability she surely would have acted differently. I am actually surprised at how nicely I get treated around town. But then I live in a small town and most people know I have something odd if they don't know it is dystonia. We have 2 dogs and I get away with a lot more than my wife does, she gets yelled at constantly for things they do while I never do.
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Posted by: chillykat ®
07/25/2004, 01:17:18
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Hi Kim
Boy did that bring back memories UGH. That happened to me at my last job, and it's unbelievable how unkind people can be. I'm so sorry you had to endure the cruelty and rudeness of that woman who obviously has no kindness in her heart. Aren't we lucky we don't have the disability of having a stone heart and uncaring soul. I know there'll never be a cure for that. I'm so glad you stood up for yourself and refused to let her talk to anyone else. Just remember, what she said is a reflection of her and not you. It's good to vent, if nothing else so you can allow yourself to let it go. Hang in there and thank you for your courage in sharing your experience. It might help someone else to deal with this unwelcome disorder we all share.
Take care, Kat
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Posted by: charlyn ®
07/28/2004, 18:04:11
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KUDOS to you for standing up for ALL OF US!I have been dealing with someone who reported that she was scared of my because of the way my voice sounds so strained at times... I overheard some comments that she actually made comments to others including the supervisor...that she was afraid that I might bring a weapon in and hurt someone...
( I have to think long and hard before I will even buy my nephews a toy gun.) Comments were made after I returned from lunch one day about the person being " nuts" and I happened to be in ear shot later when someone was explaining the comment. I went home and cried to think someone could think I was capable of such...
I don't think anyone realizes that I know about the matter, and I half way expect to be the next to be laid off even though I haven't missed a day of work in 16 months. Sometimes I feel it would be easier to be mute than deal with the comments that are made...I guess it boils down to the comment that THEIR UPBRINGING is showing.
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Posted by: Bob in IL ®
07/29/2004, 11:38:31
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Maybe you should follow our Vice President's lead, and tell them to go #$%! themselves.Just a thought. Bob Cramer ADSD / Meige Central IL
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Posted by: Bob in IL ®
07/29/2004, 12:24:50
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On a more serious note: I find that because I have to strain to talk, people often think I'm mad at them! I am an Internal Medicine physician, so I deal with older folks who are hard of hearing, and in my attempts to make myself audible and understandable, I end up sounding like I'm shouting. I've had my patients ask my nurse later, "Why was he mad at me?" For me, that's more frustrating than people being rude. I'm thick skinned enough that if some one is rude to me, I just blow them off. It's their problem, not mine.Bob
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Posted by: sjs5877 ®
07/29/2004, 12:21:38
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I get so tired of people asking what's the matter .. am I ok on the phone..
in person what i would like to have.. and maybe we ought to write it .. is a more personable version of the sd brochure...
something like..
Hi. The reason my voice often sounds strange to you is because I have a rare disease called spasmodic dysphonia. Most people don't know much about it, but it is a lifelong conditon and has no cure although treatment with botox injections to the vocal chords helps some sufferers.
Sometimes people who are not aware of the disease or even of voice disorders in general can be confused by the way the voice of an SD patient sounds.
We are not ill with flu, angry, upset, shakey or overly emotional. We just have trouble talking because spasms in our vocal chords make it hard to speak clearly. Like anyone, we want to speak clearly and not being able to is very frustrating and tiring. It is a frustrating disease, not all patients are helped by botox or even surgeries performed to reduce the spasms
Confusion over an SD voice sometimes makes people underestimate or discriminate against us. Sometimes some people are even rude or cruel. Such rudeness hurts. It feels to us about as appropriate as kicking someone in wheelchair.
I know you are a good and thoughtful person and would want to know the real story.
course i don't know how u hand it to somebody over the phone...
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Posted by: teach1 ®
07/29/2004, 16:48:08
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hI, just a thought, but what i've tried doing in the last few days on the phone is, the first thing i say is "Hello, before i say anything else, i'd like to tell you that i have a speech disability, and my voice may cut out for a few seconds, so please be patient with me," wow, every respoonse i havehad so far has been great, people say "oh, don't worry!! Thats no problem, just go ahead, blah blah blah.." it may not work everytime, but for things like when i have to call the bank, or the hydro, or whatever, where i will be speaking for a few minutes to a stranger, it has really helped me to hit them with the fact first, and they are so surprised, that they have all been really quite pleasant. Hope it keeps working! teach1
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Posted by: LarBec ®
07/29/2004, 17:06:32
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I, too, often start a conversation with a stranger by explaining that I have SD and asking for their patience. The responses I get are invariably polite and considerate, and things usually go smoothly from there.
Larry, ADSD
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Posted by: Pam ®
08/11/2004, 07:45:03
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Hi Kim,
I am sorry to hear about your experience. I deal with many phone calls at work and traveling to meet clients. My "post botox" voice is still a challenge at work. If I'm having a bad day I just tell the caller that I have a voice disorder and that the next time we speak my voice will be different! I even had one client who claimed it wasn't me she had spoken to before  I will be in the Port St. Lucie area on business next week. It's a great place! I'm new to the BB, diagnosed with ADSD last August and have needed botox about every 3 months. I was fortunate enough to be correctly diagnosed by my first ENT and sent to the great staff at the George Washington University Medical Center here in D.C. Don't let a rude person take any more of your emotional energy...there are a lot of great supportive people out there!!
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