Last week Twitter bud Ryan Knot sent me this video. In it, TED speaker Sharon Emery talks about the disabled listener and how the reaction of a fluent speaker (I like to call them “show offs” ;)) can impact a stutterer’s speech and the size of our voice, without the other person ever realizing it.
If you don’t stutter, you probably just winced your way through that. If you are a Person Who Stutters (PWS), you giggled. Because you know. There’s a lot I could and would like to say regarding that video, but I thought I’d start with this:
I have no interest in playing the role of The Stuttering Friend in the Lifetime movie of your life. And I’ll stop talking to you if you try and make me. 🙂
I’m told often that I’m “brave” or “courageous” because I speak in spite of disfluency. To me that’s not bravery. Brave is my father learning to walk on two prosthetic legs at the age of 65. That’s pretty gutsy. I’m just using the voice that I have. Same as you. There’s not really a livable alternative if you think about it.
I think that’s one common misconception that people have about stuttering. The idea that because I speak differently that it’s some great feat that I do or that I surely must view myself as disabled. I don’t, I never have, and I’d kick myself if I did. I don’t need fluent speech; I need you to listen to me.
And that tends to be difficult for some fluent speakers. It’s not your fault. You probably don’t even realize that you’re staring at the floor instead of me when I speak, it just happened. Because you were uncomfortable. Or you weren’t sure what was right or wrong to do. It’s a natural reaction. I get that. And it’s okay. You shouldn’t feel badly about it.
Lots of people in my life have commented that they wish I would have told them how to respond sooner. That, perhaps, some tips would have come in handy so they wouldn’t have embarrassed themselves. It’s not something I would have ever thought to do but…okay. Below are some rules for dealing with a stutterer. I hope it helps.
Rule 1: Please don’t finish my sentence: I can’t imagine what it feels like to be you. What it must feel like to watch someone struggle to finish a word, to gasp for air, and to not be able to do anything to help them. Finishing my sentence must feel like the most humane thing in the world to do. But I need you to let me do it. You finishing my thought reinforces the idea that I need you to help me speak. That I don’t have my own voice. I do. And it’s this one. Let me use it.
Also, if you try and guess my thought and get it wrong then we have to start over. You probably have dinner plans you’d like to make.
Rule 2: Eye contact is crucial: Without sounding like your father – look at me when I’m talking to you. I know it’s difficult. I know it may be uncomfortable. But I need you to. It tells me you’re listening, that you haven’t gotten bored, and that you remember I’m still standing here. I’m putting up a lot of energy trying to get these words out. Just give me a sign you’re tuned in. Otherwise I may start stuttering harder on purpose to keep you here. Okay, I won’t really do that.
Rule 3: I stutter; I’m not deaf or dumb: You don’t need to yell or draw out your words. My hearing is fine. We don’t need to both make spectacles of ourselves, k?
Rule 4: If you didn’t understand me, don’t pretend you did: I realize that sometimes when I stutter on a word, it may become harder for you to understand what I just said. This is normal and it’s not your fault. It’s not even my fault. It’s just one of those things. If you didn’t understand me, please ask me to repeat it. Do not pretend that you did. Not only is it kind of rude to pretend we’re having a conversation we’re not, it reduces the odds that you’ll ask me the same questions five minutes later. Because then I’ll really know you didn’t understand me. Awkward!
Rule 5: Don’t tell me to “relax” or “take a breath”: My parents had a family friend who would put his hand over my mouth when I stuttered and advise me to take a breath. No. I’m serious. He’d even take an exaggerated breath first allowing me to mimic him in case I had forgotten how, in fact, I was supposed to breathe. He doesn’t come to the house much anymore.
Rule 6: Don’t offer a disclaimer about me: An old friend would offer a disclaimer to people before they met me. For example, if she knew I was about to meet someone I hadn’t met before, she’d drop them a line or give them a call to let them know that “Lisa stutters…” Again, completely well-intentioned, but also kind of asinine if you think about it. Also doesn’t say too much about the people you hang out with if they need to be warned not to stone me on sight.
Rule 7: Have a question about my stuttering? Ask: This stutter? This is my entire life. I mean, the stutter isn’t, but funny situations like this are. If you have a question or want to know something – just ask. You have my word I will not break out in tears, I will not call you rude and I will not walk away. It actually empowers me when I get to talk about it and open up about what my life is like. Because while it’s different, I like who it’s made me and I have some AWESOME stories about getting hung up on, people thinking I was shivering, and interesting encounters with drunks at bars. I’d love to tell you about them so you can laugh too. Preferably over a beer.
The TL:DR version of what’s above is pretty simple: Focus on what I’m saying, not how I’m saying it. And if you want to know something – ask. In return, I promise to give you the same respect which means speaking to you instead of at your giant nose/zit/weird eye/etc. It’s the least I can do.
I think this post is friggin awesome! Thanks for sharing. I promise, if I ever get to meet you IRL I will do none of the above.
That was a nice read. I think even in High School and when I saw you at SES, I was unconsciously following the bulk of those rules without thinking about it. At least I don’t remember ever finishing you sentences, staring at my feet, or warning people about you beforehand. Obviously if i ever had, Then I apologize. But, to be honest, I don’t remember ever having a "problem" with your stutter. Its just a trait you have that makes you who you are.
I think I’m lucky in that I got to "know" you before I met you in person and had a face-to-face with you. (Wasn’t that first time at SMBTV?) I value your words and thoughts so much, Lisa. I admit that I was surprised, but that’s because I was over thirty when I had my first ever convo with a person who stutters, meaning you. It wasn’t amusing at all, and I felt no need to do anything but hear you. I hope I’ve been successful in not embarrassing myself (or you), though I do know the temptation has been there to "help" by finishing for you once or twice. I quickly learned that it doesn’t help, and letting you use your own voice makes real conversation so much easier and more fun!I’m so happy you’re sharing this stuff. If only because it helps people to know you and be able to have the awesome conversations like we do. You’re one of my most favorite people in the world, Lisa. Now when’s our next pedicure? 🙂
Excellent! though I would like to point out, that eye contact is over rated. And there is nothing wrong with having a disability.There are people that can’t always make eye contact, or their ability to focus, speak and respond is diminished if they do.I wonder about the comment that you don’t consider yourself disabled. While I don’t take issue with that at all, one wonders what that says, subconsciously, about the disabled. They often feel, about their disability, the same way you feel about your voice. With those two exceptions, I agree with absolutely everything you said. Great post!
Angelos: You keep mentioning how you once finished my sentence and I really have no memory of it at all. So you can stop beating yourself up over it. :p And I finish my friend’s sentences all the time – I think there’s a difference when you’re both having the same train of thought and when you’re simply trying to spare someone. 🙂
Navitweetz: I don’t need the person to STARE at me but some people will do anything NOT to look at me which is awkward, probably for both of us. Re: the "disability" thing, it’s problem a personal classification people have to make for themselves. I don’t look down on people who identify with it, I just personally do not. To me someone with a disability is unable to do something that others can. I’m able to speak, I just do it differently. It’s interesting to see how others interpret it, though.
Hey Lisa,I can totally related to what you’ve said here. Until the age of 13 (which for me, was a sophmore in High School), not only did I stutter, but I also had a sigmatism, also known as a lisp. [Now picture me saying my own name!] Not only did people do everything you listed above to me when I spoke, but they’d mostly just take a giant step backwards for fear of getting sprayed with spit from any word out of my mouth that had an "s" or "th" in it. [Kids can be so cruel]Years and years of speech drills has helped alleviate most of the dysfluencies, but I find that when I’m very nervous, they can come back at the drop of the hat.My 5-year old son is experiencing similar dysfluencies as I did, but not to the same degree. He is seeing a speech therapist now who is teaching him (and us) to use a slower and smoother rate of speech, which really has helped. He also uses sign language at times along side of speaking to get his point across. Unfortunately, when we’re out in public people just assume that we’re both deaf and yell at us instead of talking to us, so I can totally relate to your Rule #3!
In response to Missy’s comment, I had a well-meaning woman who had heard me speak at an event where i didn’t bother to try and "not stutter".She emailed me a few days later with some questions, which was just fine.She wondered if any "of us" do consider learning sign language, as a way of commuinicating better.Is your 5-year old using sign language he is being taught by his therapist, or just his own form of signaling when he wants to say something that he gets stuck on? I don’t think therapists today should be teaching kids whjo stutter sighn language, in my humble opinion. That may lead your son to feel or believe there is somehting wrong or bad about the way he speaks, and there isn’t!
Hey Pam,My son has been learning English, Spanish, Mandarin Chinese, Arabic and Sign Language since he’s 3 months old. He was able to sign that he was hungry or basically needed to be changed before he could ever speak verbally and I was truly grateful for this.Just as he practices all of these languages, he continues to sign.
Hey Missy,Thanks for sharing all of that. It’s amazing how much you don’t know about people you think "you know" from the Interwebz. 🙂 And that’s incredible that you’re teaching your son to sign like that. How valuable that knowledge will surely be!I have to laugh when people start yelling at me like I’m hard of hearing. You have to wonder the thought process that is going on in their heads. Though, I guess its like when Americans go overseas and start yelling at the locals who don’t speak English. 🙂
Missy,Thanks for sharing that additional information. Your son is lucky to be engaged in so many languages. Good that he is practicing them equally. He will be well equipped to succeed in whatever path he winds up on.Great conversation going on here!
Lisa,I had been a regular reader since your days at bruce clay for years before I met you briefly at Pubcon in a group. I thought you might appreciate knowing that the group I was with, people I believe are friends of yours, didn’t offer me a disclaimer 🙂 That said, hopefully I didn’t embarrass myself.
Heh. Yes, there’s definitely a difference between the regular conversation-style finishing of thoughts vs. the "let me make lots of random guesses about what you might be saying so that you don’t have to keep trying to say it". Suddenly, you’re in a game of charades but no one told you first so you didn’t realize you were supposed to act stuff out!I’d also like to add "slow down" to the "relax and breathe" advice. I’m having a conversation, not looking for advice on how our brains vocalize words as it turns out.
Thanks for kicking off this great conversation, Lisa! And thanks for getting my TEDTalk out to a larger audience.As for the disabled thing, I encourage you to embrace it. Really. It’s time to educate the world that disability is almost always a social construct. Yeah, you can call me disabled for not being able to speak at the prescribed fluency rate, but then I go ahead and communicate anyway – in your face, world! Not being able to walk isn’t a disability unless you can’t get to where you’re going, then you’ve got a problem – but it’s a problem created by the society (not enough curb cuts, not enough buses, not enough elevators), not by the condition itself. I feel a real kinship with all people who have been drawn inside a box by a society that has a very low threshold for being different-ness. Bring it on!
I admit, I haven’t had much experience with speaking with someone with disfluency. What really intrigues me is that the things we need to learn – the things I’ve learned from you, Lisa, and the TED video- are probably things that will help me be a better communicator in ALL conversations.
Ric – Yes, hopefully such discussions will make us all better communicators. Failure to listen is perhaps the essential flaw in the our attempts to communicate today. We think it’s all delivery and we celebrate the glib. But what if it’s the receipt of messages – and the way that can influence our response – that really determines how well we communicate???
God – I hope I didn’t make any of these mistakes at dinner on Friday. Then again, I can honestly say that as I replay the night in my head, your stutter doesn’t even register as a memory or defining factor of the night.The idea of you praying – that one stuck with me.-@Sully