8 Truths People Who Stutter Wish Everyone Understood

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Although stuttering might make you think of that nervous kid in the back of class, stuttering actually has little to do with nervousness at all. While people who don’t typically stutter might stutter when they’re nervous, for the more than 3 million people in the United States who have the communicative disorder, the precise cause of stuttering is not known.

With a lot of myths working against them, people who stutter have a few things they’d like to clear up. The Mighty worked with the National Stuttering Association to find out what people who stutter want others to know.

Here’s what they had to say:

1. “We are perfectly capable of speaking for ourselves and don’t need other people to finish our sentences for us.” — Austin Garcia

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2. “Often the fear of stuttering is worse than the actual stutter. We fear that people will judge us and label us, so we try not to stutter. And what happens when we try not to stutter? We stutter more!” — Pamela Mertz

3. “There is no cure for stuttering, and there are ups and downs. If I’m fluent today, that does not mean I’m ‘cured.’” — Shelley Benhoff

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4. “Never underestimate the abilities of a person who stutters…I’ve been told by many people that having me in their life has made them a better person because it forces them to slow down and listen.” — Tracy Fennell Sault

5. “I might not be able to say my name most of the time, but that doesn’t mean I can’t do (and love) things that involve talking to/in front of people. I did drama and theater in school with no problem!” — Kirsten Orndoff

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6. “People who stutter are quite a resilient bunch…What other choice do we have?” — Ian Mahler

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7. “We are not slow… We are as smart as anyone else.” — Fianna Peppers

8. “Being a stutterer is like being trapped in an invisible prison… Stuttering is what happens when we speak, but it is not who we are.” — Fontonya Myrick
*Some responses have been edited for brevity and clarity.
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5 Tips for Interacting With People Who Stutter

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As a person who stutters, I have encountered countless people who are unsure of how to respond to my speech. I have been hung up on because they think my phone has lost its signal and I’ve been told “It’s okay, just take a breath and take your time,” or “Oh, did you forget your name?” (Many of us who stutter, stutter on our names). It’s common to encounter a person who stutters, whether they are a co-worker, student, family member, or friend, but it’s not common to know how to react.

There are more than 3 million people in the United States who stutter, according to the National Stuttering Association. Yet, many people still don’t understand stuttering or know how to best communicate with someone who stutters.

The following are some tips for interacting with a person who stutters:

1. Use person-first language.

A person is not their stutter — it’s only one aspect of them. That is why the stuttering community prefers to be called “people who stutter” instead of “stutterers.” It is only one aspect of the individual.

2. Do not complete sentences.

“I would like p-p-p-”

“Pumpernickle? Pizza? Pasta?”

Numerous times I have had people try to complete my sentence. This can be frustrating because I am trying to communicate, and it feels like the other individual is impatient. Plus, they’re almost always wrong. It is best to remain patient and wait for the person to complete their thought.

3. Listen to what is being said and not how it is being said.

When talking to a person who stutters, it’s important to listen to the content. When you make observations about the stuttering that are out of context, it can make the person feel like they are not being heard. Comments like “slow down” or “It’s okay, relax” are not helpful.

4. Remember stuttering is a brain-based disability, not a psychological disorder.

People stutter because there’s a difference in the left hemisphere of their brain where language capabilities are located. This is why people stutter when they speak, but they do not stutter when they sing, rap, or talk in a cartoon-like voice. These are all functions of the right side of the brain. Stuttering is not a reflection of a personality disorder or deeper psychological issue.

5. Become an ally.

Becoming an ally for a person who stutters is easy. Here are some things you can do:

Not everyone who stutters is comfortable reading aloud. Ask the person before they are called on if they are comfortable and how else they might be able to participate.

Be patient and listen. Don’t tell the person who stutters about ways to make them more fluent, whether they are scientific, homeopathic or otherwise. Most of us have tried everything from faith healers to speech therapy and still stutter. People continue to stutter because of a neurological difference, not because they are lazy in using their speech tools.

Remember stuttering is just another way to speak, like an accent. Some people are comfortable with their speech and choose to stutter openly.

When someone cuts off a person who stutters, you can be an ally by saying “Wait, I think they’re not done yet.”

Tell others what you have learned here.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Asked if I Failed Her by Spending More Time With My Son With Autism

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Wouldn’t it be great if there were a manual with the exact instructions on how to be an awesome parent? Better yet, I wish there were a parenting college major, and when you earned your degree, you had all the answers. Instead, you run on gut instinct, do the best you can and hope that you’ll raise loving and compassionate human beings.

Throw a child with autism into the mix and the job of parenting can become even more challenging. How do you care for that child and also do right by your other children who do not have special needs?

My child-raising years are complete, but being a parent never really ends. From this new vantage point, my husband and I can see the fruits of our labor in both of our adult children, Molly and Jonathan. 

I was curious to find out my daughter’s perspective on growing up. How did I do as a mother? What does she think about having a brother on the spectrum? And did I fail her as a mother by spending more time on her brother? I thought I’d just come out and ask her, and here’s what she had to say:

How did I do as a mom?

Molly: Well, you’re fabulous. I always have an exceptional role model in you. You follow where your heart takes you, even when the path it takes you down is more challenging. You are communicative, honest and you listen. You’re our mother, friend, advocate, confidante and biggest fan.

What’s it like to have a brother on the autism spectrum?

Molly: It’s a fairly normal sibling relationship, but there are times when I look at other siblings and their interactions that make autism feel like an enormous wall between Jonathan and me.

Autism changes the way you communicate, and the dynamics between people that are usually a given are not necessarily applicable to someone on the spectrum. I’ve learned how to meet Jonathan where he is, and to know that in his own way, he is very present to me as my brother and friend, even if there are times when that doesn’t seem true. And beyond that, it’s exceptional to have a brother on the spectrum. It gives me a lot of permission to think differently, reach out to people and community more openly, and practice compassion and acceptance.

When we were kids running around the house, pretending to be superheroes and ninja turtles, our connection was constant. We’ve always met in a place of creativity and imagination. And now we are learning how to access that space as adults. I would say rather successfully.

Jonathan did take more of my time, but I think I was there for you when you needed me. What were some of the things I did for you that really helped?

Molly: You always listened. Everything I had to say mattered. I was heard. Both Jonathan and I have different ways of expressing who we are, and those ways were encouraged in us, even if they were off the beaten path. We were treated as individuals with things to say that mattered, and we were encouraged to say them in the ways that meant the most to us.

I’m a very introverted person who prefers to share myself through music or plays about strange characters or by diving into some kind of creative world. Growing up and even now, that way of expression has been valued. That’s helped me learn how to embrace who I am and extend that value to other people in my life. And I think the same is true of Jonathan.

Did I fail you as a parent by spending more time with Jonathan?

Molly: No, you didn’t fail me as a parent. Parents aren’t perfect all-knowing humans. They make mistakes like anyone else as far as I can tell. If there is unconditional love, support, honesty and openness that runs underneath the decisions and interactions between parents and kids, then it is very difficult to consider anything a failure. And with you, there was always unconditional love, support, honesty and openness.

If you had a chance to speak to parents who have a child on the autism spectrum and one (or more) who do not, what would you say to them?

Molly: Let your kids be dreamers; let them dream big. Help them cultivate a spirit and drive that just won’t quit. Let them live their truth, even if their truth wasn’t what you planned or imagined. Chances are by meeting them in their place of truth, they will become people who are even more extraordinary, surprising and lovely than a person could ever plan for or imagine.

But I’m no parent. I’m just lucky enough to have great role models in you and Dad. I watched you tell my brother, autism and all, to dream big and to never feel less than. And Jonathan is one of the most extraordinary, surprising and lovely human beings I know.

What would you like to say to the siblings?

Molly: If you’re open to it, having a brother or sister on the spectrum will give you a crash course in seeing the world in a whole different way: a way of deep compassion, acceptance and openness. We have a really exceptional opportunity to understand and appreciate the incredible things that someone who thinks, engages and interacts with the world differently contributes to our lives and the lives of others. I am a better person for knowing and growing up with Jonathan. He teaches me about strength, kindness, fun and openness everyday.

It may not feel like this all of the time as a sibling to someone on the spectrum, but trust me on this one: We are so unbelievably lucky.

Thank you for sharing, Molly. I am so proud of who you are and I am so blessed to be your mother. 

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why This Teen With Cerebral Palsy Earned a Standing Ovation at Graduation

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On Sunday, the class of 2015 graduated from Columbia High School in Columbia, Illinois. For Robbie Small, getting a diploma wasn’t the only accomplishment that day.

Small, 19, was born with cerebral palsy. His parents were told he would never recognize them, let alone attend and graduate high school, according to KSDK News. But on May 18, despite having used a wheelchair all through high school, Small, with a little assistance, walked to the podium to receive his diploma. The whole crowd gave him a standing ovation.

Small had an important reason for doing this.

To show people that you can accomplish your goal,” he told KSDK News, “even though it’s hard for you.”

Watch Small’s triumphant moment at the 1:40-minute mark in the video below:

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To the Girl at Target Whose Mom Apologized to Me

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I wrote this post twice, but something about it was off. So I rewrote it when I realized the first time I was talking to the wrong person.

At Target, I stood behind a lady and her daughter. Her daughter was bouncing and talking to me. She seemed hyper, but not too out of the ordinary. Her mom then said, “Sorry.” She apologized and explained that her daughter has autism.

This hit me. It hurt my heart. Not because the little girl was autistic, but because her mom was saying sorry.

When I first started writing this, I was talking to the mom. Now, I want to write this to the little girl:

You are awesome. What you are doing, this hyperness, is awesome. Find ways to use this hyperness for something you really want or need. I use mine to clean and to write. Don’t find one passion, find a bunch of them. Make them all across the board and be random. You aren’t a mistake — you are a fantastically strange human, but that’s a good thing. We need you in this world to make it better. You might wonder why I’m telling you all this. “How do you know?” you might ask.

I have the answers to these questions. I’m autistic, like you. I have a disorder in my brain that for some reason makes me different from the rest of the world. Now your mom, she is doing her best, but she is just saying sorry because she because she might not know you understand her. But I saw your eyes. You got it. And I know if you are like me, you’re going to go over that moment and try to figure out what you did wrong.

You didn’t do anything wrong. Your brain is just different, but you’re fantastic. You’re fantastic because you can think differently and because you do things in different ways. You can change the world, you can and will. Just keep trying and don’t give up on yourself.

I know people will look at you weird, but when you have an overload of emotions just let it come. Get it out, cry and scream, and let it be. Let yourself feel the emotion.   

Your parents and family won’t always understand you, but try not to let that bother you. Let yourself be OK. Try to find what makes you happy and what you’re passionate about. For example, I love taking photos. I love older people and children. I like the color purple, but don’t wear it a lot. I love things and I hate things. I have a list in my head. 

When people talk like you’re not there, just act like they are talking about a panda who lives on the moon. Believe me, people will talk like you aren’t there. Be happy with yourself. I like to tell myself that no matter what, I can’t do anything to change the way I am, so I accept who I am and embrace it.

Don’t let everyone tell you how weird you are or how they can cure you. I know things will get hard, but that’s OK. Keep pressing on. Keep going. You are fantastic, you are funny, and you make everything better.

A version of this post originally appeared on ShayWeasel.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How My Husband and I Made Our Trips to the ER More Romantic

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My husband and I got married on a windy, September afternoon in 2014. Three days later, we made our first ER run as a married couple. And so began the “date nights” that have been a consistent fixture in our calendar during our first 8 months of marriage.

I live with a chronic illness called Mast Cell Activation Syndrome (MCAS) which is a condition where my mast cells are hypersensitive and continually release chemical mediators throughout my body.

The symptoms are most severe in my GI tract where my mast cells are sensitive to any solid food that requires digestion. It can cause severe pain and motility issues.

We’ve tried to count how many times we have been to the ER in the 8 months we have been married. I think we ended up somewhere around 15-17, and that doesn’t count hospital admissions. We jokingly began referring to our ER trips as “date nights” after a particularly difficult week that resulted in two trips on back to back days.

Since we can’t go out to eat, because I can’t tolerate food, and we don’t go do other activities often, because a lot of times I feel sick or just don’t have the energy, for a while it seemed whenever we did go out in the evening it was to the ER.

Sometimes it’s hard to see our friends posting on Facebook about going out on date nights and doing fun things. Both my husband and I love to be active, and it can be difficult not to be able to do “normal” newlywed activities. Instead, we sit at home watching the next season of House because I’m not feeling well again.

Referring to our ER trips as “date nights” has become a joke for me and my husband to share. It helps take away the disappointment and frustration that comes with the ER visits and helps remove some of the negative emotions surrounding each episode. It helps us disconnect from the fear of dealing with a chronic condition. Plus, it makes it even more fun when we do get a real date.

Just a few weeks ago, we were able to go on a double date with friends of ours to a drive-in movie. As we were heading to meet our friends, we realized it was the first “real” date we had been on in a while. We got a laugh about it and quickly quieted our voices so we wouldn’t scare the good vibes away and spoil the evening.

Living with a chronic illness has its challenges. It can be hard and frustrating and difficult and disappointing. At the same time, though, we have learned to find something to smile about in everything and truly treasure the good moments I do get. While our date nights may not look the same as couples other couples’, every one is time spent with my husband, whether we are in the ER or at a drive-in movie.

We have learned to treasure even the hard times and make the most of the good times. Plus, when we do get a “real” date night, it’s that much more worthy of a celebratory Facebook post.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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