We parted.

It amazes me how often I am unable to make friends with people in these situations because I almost never am willing to risk chatty or casual conversation. Cuz I sound bad.

You guys know all the details, probably. I am ashamed to say that I can't wait till she is gossiping with someone in the lunch room and realizes that the new woman (me) in the school actually has a speech disorder and she was the one who told me that I sound awful.

Like, I feel an enormous sense of satisfaction in realizing that she will feel terrible when she finds out that I always sound awful. I told my children this story and they thought I was a bad girl. It is hard to always be a good role model for our children!!

When I first came down with my SD, a friend called on the phone. He's known me before my voice problem. The first thing he said was "What's wrong with your voice?" Since I wasn't sure what I had I just said it was hoarse. "Oh" he replied and we kept talking. Over the years I've heard comments like "Are you okay?" "Do you have asthma?" "Do you have problems with your lungs?" "Is the ventilation system in this room affecting your voice (allergies)?" And "Can you repeat what you said? I think my cell phone's cutting out"!

Maybe part of the problem is that few people's voices sound like ours. But when anyone comments about it, I usually tell people I have problems with my voice and it's okay. If they're curious I explain it. The other day I told someone on the phone and he said he knew an elderly lady with the same problem. He actually knew about SD!

As you say...we all understand what you are going through.

The best one-liner I heard recently was at the ST conference in Reno two weeks ago when a woman with a bobble-head neck (tremors and spasms and pain) said that she tells kids she has a Mexican jumping bean in her neck. I suppose we could use that for our voices also. Mexican jumping bean in our vocal cords.

Among other things, I've been told by insensitives that I need a lozenge. When I told the woman who said that to me, on a full public bus, that I was disabled and only had one vocal cord, the entire busload of folks stared her down pretty bad. They were on my side.

My best "one-liner" (so to speak) is always the 3-fold cards. Flipping one of those out, with confidence at the appropriate time, always makes a point.

It's great to be prepared with something quick and witty that you can lay on some insensitive person (3 or 4 funny sayings are fine) but I always think the best retort is to say..."I have a neurological vocal disorder, like Parkinson's...but don't worry...it's not catching and it won't kill me either" (or some derivative of such). If we all don't say something like that eventually, nobody will ever learn about our disorder.

The most important thing to keep in mind is that people make those comments about you or other disabled people because they are not secure in themselves and they know darn well, that if faced with it themselves, they probably couldn't handle it. They are terrified. Unfortunately, once we have this, our job (like it or not) is to educate the rest of the population. We've been annointed.

Keep us posted.

I am curious about the "three fold" thing you mention and how do we get ahold of such a thing?

The three-folds are always available at symposiums so you can get some in DC, if you still think you might go. Or, you can contact the NSDA and order some. I wouldn't recommend doing that this week as the entire staff will be in Miami soon and they're getting ready for that.

Or, you can send me your snail address off the BB and I'll send you 25 today. I order a box of 500 twice a year and spread them as thin as I can. I gave out 15 of them to various people at the Dystonia Daze Symposium in Reno two weeks ago.

The best thing about the cards (since I don't imagine everyone reads the whole thing) is that it gives you instant credibility. Satisfies the curiousity of recipients who are truly concerned about you, and makes the ones who just don't *get it* think twice about making fun of someone with a bad voice. They wouldn't do that to someone in a wheelchair.

Reminds me of something I saw on TV yesterday. It was commercial for Ronald McDonald House and briefly features a boy about 11 who had his leg amputated due to bone cancer. He used that old adage when people stare at him..."take a picture - it lasts longer." And, then he said (paraphrasing, because I didn't write it down)..."So, sometimes my leg is on backwards and my foot is pointed the other way....who cares, I'm still *me.*" It was great. I'm sure his parents are proud of him.

Catch you on private e-mail, Sarah. The cards are already in an envelope and will head North when I apply your address.

--Lynne (AD/SD; Northern California)

But, here's my take on the problem of people's ignorant remarks:

1) If the person is a jerk, do whatever you need to do, to not let them get you down.

2) If the person is ignorant, but means well (sometimes, give 'em the benefit of the doubt), and might be a potential ally, then I like the idea some of you expressed, of explaining SD to them, and then asking them to try to ignore it and treat you like they treat everyone else. :-)

The reason I like #2, is that it allows you to vent your feelings, and it educates people who may help others that have SD. And, when it's convenient & appropriate, I like an honest exchange of info between people.

3) But, since it obviously is tedious to have to explain your situation, over & over again, just do what feels right at the time! :-)

Did you ever look up that guy "Joe", to tell him that you now understand? If he's still around, you could remove the haunted memory! :-)

Value-nuetral statements are an opening to share information with someone who might be curious.

Value-negative statements shut down communication.

Value-positive statements are simply compliments!

Sarah

My first reply to, "are you sick, etc.", is always: "No, I got airbagged six years ago and didn't even HAVE a voice for three months". Then am happy to talk about my rare neurological S.D. problem and the six years it took to get the diagnosis, etc.

(For all of you who do not think about it, be very careful sitting too close to an airbag. The one time I slid closer than normal to the steering wheel for a tall person in the back seat, happened to be the day of a head-on, low impact car crash. When the airbag of my son's '95 Ford Tempo imploded, I later learned through research that the force was equivalent to 2,000 pounds of pressure and exploded at the same rate as a shotgun, filling the car with gunpowder/fire smell. I also learned the government had simply standardized airbags on average sized men of about 180 pounds in the '60s. I am told that airbags are somewhat less brutal now than six years ago (?) Many small women and children have been killed, lost eye sight, suffered burns, had internal/external injuries, necks broken, etc. I clearly remember thinking that my head was going to fly off my neck and I was going to be a quad, in the split second that it happened. For all S.D. patients, please please please be very mindful of sitting close to airbags or even having anything on your lap,wearing glasses if you don't have to.

I didn't mean to get off subject, but my catchee phrase of "I got airbagged"...has never failed to stop even the most inconsiderate person from wanting to know more!

Awesome and important information on airbags (quality-control-stuff). Thank you so much. You have educated me. These are the things the *experts* (automobile people, or in *any* industry) don't ever tell us.

I responded to this thread already but was moved to do it again, with this info from you. Like you, I have used a classic one-liner over the years people have commented on my voice, which gets people's attention: "I only have one vocal cord." That factual statement seems to bring out the ignorance in the human population because many people (believe it or not) don't know how many of each organ they have. I've had some fun with that one. Too much info to mention here, but I've actually convinced a couple of folks in the past that they may have four or more (because they are *so cool*). Seriously!!! ;-) Been fun to play with that.

I'm glad Sarah started this thread, because all of us SD'ers need to have a *Bag of Vocal Tricks* so that we can respond quickly (never easy or casual for us) to such situations, and say something which protects us and expresses us, but might actually educate someone who needs to know about SD or at least understand they shouldn't be so darn rude.

Thanks Sherry! Excellent info. Off to Miami now and hope that BB participants will write us there and reach out to any new patient, on the Dystonia or SD Bulletin Boards, who might happen along and write their first post from there. New posters always need support.