Make Room For The Stuttering

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I am repurposing this blog post today because I noticed a colleague posted this on Twitter, in explanation of what presidential candidate Joe Biden may actually be doing when he looks for words or pauses too long. The colleague on Twitter pulled this up from 10 years ago. This brought me comfort, knowing someone found something I wrote so long ago, that still feels completely relevant.

So here’s the post I wrote way back in 2009.

We have all done it! Got stuck on a word, got frustrated and fearful that it might never come out, and switched to another word. I hardly do it any more, because I feel more comfortable with just stuttering freely. But sometimes it happens and honestly surprises me when it does.

I was on the phone with a good friend that stutters, having a relaxed conversation. I tend to stutter more on the phone anyway, as many people who stutter do. But when the person on the other end also stutters, forget it, I can really let go and just speak freely, with almost no self-consciousness. We both understand how to listen to each other.

So, I was really surprised when I word switched anyway. I guess it speaks to the complexity of stuttering. Even though I was at ease, the word giving me trouble really made me feel uncomfortable. Like I went to that “nowhere place” and was afraid I wouldn’t come back. If I didn’t come back, where would I go?

I was trying to say the word “easier”. It came out “eeee-eeee-eeee-eeee” and that’s all, at least four or possibly five prolonged attempts. It was not coming. I felt myself tense up and get frustrated.I just wanted to get to my point. So after a pause, which added to the feeling I already had that this was an incredibly long stuttered moment, I abruptly switched and said “better”. I felt a hot flash come over my face as I said it, because I knew I had given in to something I don’t want to give in to anymore.

And I knew my friend was going to catch it, because as a stutterer herself, she was patiently with me in the blocked moment. So it was no surprise when she did say something like, “Ohhhhh, what are you doing? Noooooo!” Unlike a fluent listener who may have no idea of the struggle I felt at that moment, she knew and stayed with me, patiently and unconditionally. I wasn’t patient. I still chose to bail myself out. Why?

I don’t remember doing this so consciously when I was actively trying to be covert and keep my stuttering largely hidden. I think now that I am not fighting my stuttering so much, I am having more surprising moments. More teachable moments, perhaps? Hmmmmm.

I honestly don’t know why I felt I had to switch like that to move past that stuttered moment. Except for just the pure desire to do just that – “move past the moment.” I did not like how it felt. It was slow motion, “eeeeeeeeee – eeeeeeeeee – eeeeeeeeee” , like the sound a creaky floor or step makes when you step on just that right part. It can be kind of jarring to step on that creak and just as quickly, you move to another spot on the floor where it doesn’t creak. So maybe that’s what I was doing. Not liking the sound of the creaky step and moving to a spot where the creaking would stop.

But this I know: I do not want to switch words. Creaks in steps or on the floor are OK.

Does this happen to you? At those unexpected moments? How does it make you feel?

Each year, the International Stuttering Association helps to coordinate a 3 week online conference where anybody who is interested can learn more about stuttering from experts in the field, first and foremost, people who stutter.

I have been lucky enough to be part of the small team that helps coordinate the conference “behind the scenes.” I help upload content, moderate and approve comments and help advertise the conference. I actually have been a participant in this annual conference since 2008, writing papers and contributing video presentations. I find this to be one of the most significant learning experiences for anyone in the world to learn more about this complex thing called stuttering, that affects 70 million people worldwide.

This conference is unique in that anyone can comment or ask questions to the contributing authors and the authors write back, so it is interactive and informative. There is no better feeling than knowing that this experience helps people who do not stutter better understand.

This year’s theme is “Growth Through Speaking.” You can interpret that anyway you wish, and read, watch and listen to how others interpret it. The conference is “live” from October 1 -22 every year, and everything is archived for viewing at any time after the conference concludes.

Visit and learn today. And hey, you might see something on there from me again this year too.

I had a wonderful conversation last week with a woman who stutters who will be featured on this week’s episode of the podcast Women Who Stutter: Our Stories.

We spoke about how important it is to own our story and be comfortable with all of it. That is the primary reason why I started the podcast, to give women who stutter a space to share their stories, because we all have one.

We talked about how sometimes we can feel so diminished when someone mentions, “Oh, you don’t really stutter,” or “I can hardly tell you stutter.” It brought back memories of a time where I found myself telling someone, “Yes, I really do stutter, honest I do!” It felt like yesterday, that feeling of having to defend that part of me. Why in the world would someone need to convince someone that they really stutter? You’d think there would surely be more important things we’d want to defend, like honor, integrity, reputation.

As I thought about this, I realized anew that my integrity and reputation is based on the very fact that I honor my story and don’t shirk from it, that my experiences with stuttering have greatly shaped and informed the person I am today.

People don’t really know me unless they know my story. How can you possibly know someone when you don’t (or won’t take the time to understand) the life cycle of all that was grappled with, reconciled and is now proudly owned as part of me?

All of us have a story, a legacy that will live on after we are gone. I want people to remember me, not just for something I did, but for who I was as a person.

What about you? What’s your story? What do you want, need, for others to know about you? What do you hope for in your legacy?

 

 

On Friday, I went for the third year in a row to help with a collaborative mock interview event held at Goldman Sach’s NYC office. Employees from Goldman Sachs volunteered to help people who stutter practice interview skills in a stutter friendly environment that simulated real interviews.

A small team of people who stutter educated the volunteers who were spending their day learning about stuttering and how effective communication is not attributed to fluent speech.

I knew several of the volunteers as they’ve participated in each event, and they remembered me. Several indicated that this day has been very meaningful and helped them realize this is a way to “give back” and help job seekers in a very tangible way.

It was hugs all around when I arrived and greeted these who are now friends.

It is so empowering to share stories of stuttering and vulnerability to people who don’t share that experience and see the power of authenticity.

One guy came and spoke with me and shared that he vividly remembers when I participated in the first event in 2017. He said he was mesmerized by my story and how I commanded the room when speaking. We talked about how he raised his hand and shared with his colleagues for the first time ever that he also stutters and had always hid it. That was a powerful moment for him.

And it was an extremely powerful moment for me when I saw him on the diversity and inclusion panel at the end of the day. He shared his story of how much easier it’s been for him to build relationships with colleagues because he’s no longer covering up such an integral part of his self.

Honesty and authenticity fosters deeper relationships, which in turn increases productivity and team work.

What an exciting, life changing experience this has come to be and not just for those who stutter.

Everyone benefits when everyone can feel free to be true to themselves in the workplace, the place where most adults spend most of their time.

 

There is so much truth to the fact that a job interview can be the single most stressful speaking situations anyone might have. You spend time trying to look the part, sound competent and informed and you practice many possible interview questions so that you will sound prepared to blow the interviewers away with great answers. No matter how much time you prepare and rehearse, you are likely to still be nervous and feel pressured.

It’s also true that for a stutterer, the stress of a job interview for a person who stutters is 10 times than that of a typically fluent person. We worry about possibly not be able to say our own name fluidly, we worry about hesitations or pauses that are too long and we worry that the interviewer may be drawing an incorrect conclusion about us based on our different speaking pattern.

I recently had the first interview I’ve had in 11+ years and not only was I nervous, but I also had to prepare a 5-7 minute presentation on a topic of my choosing and deliver it to the panel of interviewers. When I entered the conference room where we were to meet, the interviewers said that we’ll start with my presentation. I wasn’t expecting that to be the first thing, but it helped calm my nerves to get it done and out of the way. I chose to do my presentation on “How To Nail A Job Interview.” It was something I could speak about quite comfortably and it was relevant to the very job I was vying for.

I felt that the interviewers liked my topic and how I presented it. The question and answers part that followed seemed standard. They both had a list of scripted questions they asked and they tried to go back and forth. I had a couple of questions for them at the end of our conversation, which I hoped showed my genuine interest in the job.

I intentionally decided against doing any formal advertising of my stutter. It only came out a few times, multiple repetitions but without any struggled behavior or tension. I’m hoping they didn’t even notice.

I find it quite incredulous that I am at this stage in life and in my career that I have to interview and find another job. This was not part of the plan. I had thought I would work about 10 more years where I was and retire from there and then look for a part-time role that I’d enjoy and still get paid for,

It’s challenging to be doing this in your 50’s. Yes, the job market is tight right now, but most vacancies seem designed for younger workers, recently out of college. The worst thing is loosing employer sponsored health insurance.

Another thing that I did not see coming at all.

I hope I hear something soon, because I haven’t had any other interview invitations and have had two rejections via email. I don’t care for those at all.

Wish me luck as I try to start all over again.

 

 

 

 

 

 

nina g book coverOne of my favorite people, and repeat guest on the podcast Women Who Stutter: Our Stories, Nina G, has a book launch on August 6, just a couple days after her birthday. Genius!

I had the opportunity to read an advance copy. Actually, I read chapters of it before it was even in proper book form. Nina asked me to help proof the first few chapters. I have been salivating since, waiting to read the whole thing.

And this review is completely unbiased, despite the fact that I am mentioned in the book, not once, but twice. I won’t spoil it for you by hinting where I pop up, but I assure you, it’s one of the best stories in the book.

This is a “must read” if you stutter, care about someone who stutters or have just about any “thing” that makes you different. Because at it’s core, Stutterer Interrupted is about owning and celebrating who we are with our differences and quirks. It’s also about honoring the fact that we should do that and take up space in this conformist world of ours.

Nina’s book is a fast read. Well, for me anyway, it was. I read it all in one sitting. Rather, I inhaled it. Why? Because it’s personal and authentic and pays homage to finding ourselves. I recognized parts of me in these stories brought to life in rich, conversational bites. Each chapter is about different life experiences Nina has had, that have shaped her into the “living my dream,” “rocking my inner badass,” female stand up comedian that she is today.

Stutterer Interrupted is about reclaiming the space that we never thought we were entitled to. It’s about activism and advocacy, using humor and storytelling to reach people in authentic ways. It’s not a research paper. It’s not a peer reviewed journal article. It’s a story that has been years in the making and begged to be told.

The world needs more light shining on those differences that make us who we are and help us survive in an otherwise boring world. Nina urges us with her “in-your-face” honesty to take stock of who we are and who we want to be when we grow up. And then go get it.

Read this book. Now. It’s important.

It’s written by a woman who stutters which I kind of have a soft spot for.

 

I returned from my 14th consecutive National Stuttering Association annual conference on Sunday evening. It’s now Tuesday evening and I’m still recovering from the screwy schedule and overall weird week.

The conference had a much different vibe for me this year. For one thing, I did not lead or help with any workshops, for the first time since my second conference way back in 2007. It felt strangely naked to not always be looking at the time, and planning to leave sessions early to prepare for something else. My only responsibilities this year were to help lead the first timers activities and I wound up not even doing that.

The annual conference this year was held in steamy Fort Lauderdale, Florida. It was hot and incredibly humid the whole week. I literally only went out of the hotel two times in six days. It was stifling hot and I always find it harder to breathe in sweltering conditions like that, I get headaches and I fatigue much faster than normal.

The hotel and a five block radius lost power for most of the day on Wednesday, the official “start” of the 4 day conference. That meant there was no air conditioning for about 16 hours. The Board of Directors had our summer meeting in a sweltering room Wednesday morning and then I was down for the count. I felt sick and nauseous from being overheated and I quickly became dehydrated, which triggered my inflammation.

I wound up staying in my room for the rest of Wednesday and all day on Thursday too. By Thursday, power was back and I just took it easy in the AC and drank lots of water and felt normal again by Friday.

I felt so bad to have missed some things those two days but I have been getting much better at taking care of myself. I knew if I didn’t choose to hibernate, I would have missed things on both of the last days too. So I made the right decision.

I attended several really good sessions on Friday, including a last minute meet-up for covert stutterers. About 40 of us showed up just from word of mouth and it turned out to be one of the most powerful hours (for me) of the conference. People shared openly and with such raw emotion how it feels to sometimes hide our stutter and the complex feelings that arise from constantly trying to do so.

I also attended sessions on job interviewing (which is particularly applicable to me personally right now) and one which aimed to discuss implicit bias at work but kind of missed the boat a bit, which actually was quite OK because it spurred great dialogue.

I also had the chance to connect with several people I’d only met online so it was great to meet people in person and intentionally take time to connect. I often didn’t take the time to do this at previous conferences since I was busy with several workshops and leading other events.

I missed spending time with several close friends who I actually hardly saw at all, which contributed to the “weird vibe” I felt all week. A group of us always sat together at the Saturday night closing banquet. This year, I wasn’t part of that and it was OK. It gave me space to connect with Ariel, and meet Joseph’s wife, and talk with Sage and his wife, and Shannon and meet her mother, and go have a meal with Dana and Derek. Those moments were medicinal for me, like oxygen, like friend Hanan often says.

The highlight of the conference for me came Friday night, when I leaped far out of my comfort zone and participated in the inaugural session of a poetry “Stutter Slam.” I wrote an original piece and shared when it was my turn. I was nervous to deliver something so personal but it felt right. To my surprise, I won the event. I have received numerous requests from people to share a copy of my poem. Funny, I don’t want to do that because it doesn’t look right on paper, it only came out the way it did through the spoken delivery. Below is a recording of my performance. It felt so good and so right to share.

 

It’s almost time, unbelievably, for the annual conference of the National Stuttering Association. The 2019 edition will be in beautiful, warm Fort Lauderdale, Florida, officially beginning Wednesday July 3. I am arriving a day ahead to have time to “ease into” all of the activities. This will be my 14th consecutive conference. My first one was in 2006 and I haven’t missed one since.

I almost thought I would have to miss this year’s conference. I have been weathering a physical illness for months now that still seems to be a mystery in it’s root cause. It’s something fancy called “small fiber polyneuropathy” which basically means chronic pain and inflammation. It began in my ankles and legs and has migrated to my hands, wrists and fingers. It’s been really frustrating because I have worked with a team of medical professionals and no one can seem to find a cause. It’s sort of like stuttering in that there’s no known cause. Lucky for me, right?

I missed a month of work this past fall and since have had a lot of follow up appointments so I can function and manage as well as possible.

But the “shit hit the fan” when I learned that my job has been eliminated effective June 30. Along with loss of income comes loss of health insurance which is a huge concern at the most medically vulnerable time for me.

So I have had to think long and hard about spending money to come to the conference, as quite understandably, I’m a bit panic stricken about losing health care access. The United States has a broken health care system. But you know that already.

Ultimately, I have decided to attend anyway, for my mental health. To miss out on the conference after the rough few months I have had would devastate me. I have been actively involved in the NSA’s workplace stuttering initiative and I want to see out the end of my term on the Board of Directors of the NSA. I still have work to do, with lots of ideas to continuously improve outcomes for people who stutter.

So I need to be at the NSA conference next week. The support and empowerment and the many friends I consider family is way too important for me to miss. I need to see my people, my tribe and ask for help from some of those individuals who might just help me find my next opportunity.

This will be the first year since 2007 that I am NOT doing a workshop. That feels a bit weird but at the same time empowering because now I will have time to attend a lot of workshops that sound intriguing and meet new people. To me, that is always the best part. The people, the connections, the love.

So I will be there next week and I can’t wait. I’ve got things to do and people to see and hug. My chaotic world will still be here when I get back, right where I left it.

Looking forward to seeing you.

NYCRecently, on May 28, I had the amazing opportunity to present an awareness session about stuttering at the NYC Mayor’s Office of Employment for People with Disabilities. I had been invited by the director of the department after he heard me speak at another event in NYC.

The team was keenly interested to learn about the wealth of resources that are available to stutterers in the NYC metro area, including six local NSA chapters where people who stutter meet up in person for support and solidarity.

I talked about my own personal experiences with bias and discrimination in the workplace and shared the employment advocacy program that the National Stuttering Association recently launched to help individuals who stutter and prospective employers through education about stuttering.

It was an exciting day. The NYC Mayor’s Office is committed to help spread awareness about stuttering to employers who may be afraid to hire someone who stutters. And that’s a big deal – because there is about 80,000 people who stutter in NYC.

people talking and bubbles

I wrote an article about my experience with being laughed at and insulted by a nurse.

It was published by The Mighty and also picked up by Yahoo News.

The article is called What Will It Take To End the Ignorance About Stuttering? 

I am proud for standing up and speaking out. I just hope that it makes a difference.

Several weeks ago, I wrote about the very uncomfortable and embarrassing experience I had at my doctor’s office when a nurse laughed at my stuttering and made a very sarcastic comment about it. I stood up for myself and said something right there and then to her, but she denied that she laughed because of my stuttering, despite it being clearly obvious.

Two days later I had emailed someone in Patient Engagement with the medical group to express my concern that a medical professional had been so insensitive and disrespectful. I spoke with someone two days later and again at the end of the week to the Office manager.

I was told that my concern was being taken seriously and that Human Resources would be in touch, as they thought my offer of doing an education session was very appropriate and would fit in well with their commitment to compassion, diversity and inclusion.

Almost three weeks then passed without hearing anything, so I called and left a message with the Office manager, just wondering where we stood with this. She got back with me yesterday and said that the HR manager was now sort of back pedaling and not sure if an education session could happen, as they get multiple requests for training all the time.

The Office manager gave me the name and email address of the HR manager, so I crafted a carefully written request to her, that it would be nice to get a positive outcome from a very unfortunate encounter with a nurse. That person emailed me back pretty quickly thanking me for taking the time to share and reiterated that they do have competing requests for training.

I had done more than just “share.” I asked for an opportunity to educate and teach those who people come to for help how to best interact and respond to someone who stutters.

I had attached three brochures from the NSA, including one written specifically for physicians and pediatricians. And I noted that medical staff don’t get any training about stuttering and for that matter, neither really did speech therapists.

I am going to persist. This is one of those “teachable moments” that I can’t just let pass. It’s incomprehensible to me that a nurse at a Catholic hospital group whose website is loaded with their values of compassion, dignity and respect for all they serve, would so cavalierly laugh at and mock an adult patient. What about children who stutter, who are not good at self-advocacy? At the very least, an apology would have been nice.

Nothing ever changes unless we be the change we want to see, right?

 

10 days ago I shared here that I was concerned and shocked actually that a nurse in one of my physician’s offices laughed and made fun of my stuttering when she asked me my birth date. I remained composed and called her on it, fairly calmly telling her I was stuttering and that was what she was hearing. Not only did she laugh, twice, but she also made a smart comment, saying, “It’s not a trick question,” when I stumbled over the numbers of my birth date.

I really was shocked that this happened. It’s been out there over the last year in the media, where people who stutter have been laughed and mocked by retail or fast food customer service employees. It had been a long time since a medical professional had reacted like this with me and it really bothered me. After standing up for myself to her, and not getting an apology, I stewed about it for a day or two.

Then I decided to contact someone in the “Patient Experience” department in the hospital that oversees the practice in question. I wrote a detailed account of what had happened and how it made me feel and included all of my contact information.

Two days later I got an email response that my information had been received and forwarded on to the appropriate people.

Yesterday I got a call from someone in “Patient Experience” who said she was one of a number of people who had been forwarded my email. She apologized on behalf of the hospital and wanted to know what could be done to make it right. I reiterated like I had in my email that I think some type of education needs to occur to prevent another such belittling experience from happening to someone else who stutters, possibly someone who is not as far along as I am to feel comfortable to stand up for myself like I did.

I also stated that I don’t want it to become a situation where it becomes uncomfortable for me to go to back to the office for follow up, as I like my provider. The woman was very thorough and professional and again offered up apologies during our conversation. I mentioned had the nurse in question apologized to me when I stood up for myself we probably wouldn’t be having this conversation.

This person let me know that she would be passing this along to the specific office manager of the practice where this encounter occurred and that person would likely contact me next. I look forward to that conversation.

And I am happy with myself for having the courage to follow through on this. All of our voices need to be heard.

PamEpisode 197 features Madeleine Maccar, who hails from Central New Jersey. Madeleine is a writer for a trade magazine. She started off in journalism and reporting. Madeleine found writing at a young age to be her “life raft” of confidence.

“When I wrote, I could use any word or all of the words. I didn’t have to change anything. Writing gave me a voice.”

Listen in as Madeleine talks about learning that her stuttering was a much bigger deal to her than it was to others. She says that a speech therapist helped her realize that stuttering is magnified three-fold in our heads: we think we will stutter, then we do stutter, and then we think about the fact that we did. We talk about the tremendous amount of head space that we give to stuttering.

Madeleine seems really happy to have found the stuttering community. We’re glad that she has too!

The music used in today’s episode is credited to ccMixter.

A lot of us who stutter have had to deal with people who react negatively when they hear us stutter. I have had people laugh, mimic, roll or avert their eyes and say things that have made me feel hurt, frustrated and angry.

Over the years, I’ve gotten better at standing up for myself and using tough moments like that to educate the listener, which sometimes actually resulted in listener embarrassment and then apologies. I have also learned to pick my battles and sometimes I just let stuff go, especially if I will likely not see that person again.

Sometimes though I am still shocked when this happens, especially in the case of adults.

A few days ago, I visited my physician’s office for an appointment that they fit me into rather quickly because I was having a serious medical issue. So, I wasn’t feeling well when I went in.

When I was called in by the nurse, she had me go through the routine and stop to get weight before heading to the exam room. As I was putting my stuff down before stepping on the scale, she asked me for my birth date. I always stutter on numbers and have stuttered on my birth date many times. As I began and stuttered on the “tw-tw-twelve,” she started laughing. I was so not in the mood for this. I glanced up at her and continued on with “thir-thir-thir-thirteen,” and she laughed some more and said, “it’s not a trick question.”

I said, “what do you mean? I stutter and I’m stuttering. You’re laughing at me.”

She said. “no, that’s not what I’m laughing at.” I said, “Oh, then what’s so funny?” She said, “you looked confused when I asked you your birth date.”

I said, “I know my birth date. I stuttered on it. I stutter. And that’s when you laughed.” She looked away and said, “that’s not what I meant.”

And then silence. I didn’t say anything else. Neither did she. She didn’t apologize. I wasn’t expecting her to but I guess I did expect to see her register some acknowledgement that she had laughed and made a stupid comment towards a person with a speech impairment.

I felt belittled and disrespected in just that 60 second encounter. I stood up for myself but still walked away feeling like crap. I’m not sure what I could have done differently to feel better about the situation.

Thoughts?

 

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I have to share this.

Three days ago I received an email out of the blue from someone I communicated with about stuttering quite a few years ago. We last chatted in 2012.

This is what she said (with just some minor edits)

I have a very important job interview this Thursday for a position that I really want. I have been considering being completely open and honest about my stutter during the  interview, something that I have never done before. I know you are a big advocate for being open about our stuttering, so I was hoping you could pass along some wisdom or advice. I am terrified. It’s a corporate position and while they state that inclusion and diversity is a part of their company values, I am so terrified of not getting this job because of my stutter.

I feel like I will be taking a gargantuan risk by letting my interviewer know about my stutter. I am also just simply terrified because I know how “badly” I stutter during high-stress events, and nothing could be more high-stress than this job interview. I would really appreciate any advice or words of encouragement you might offer.

Of course, I emailed her back and shared my thoughts. I asked her to let me know how the interview went.

I heard back from her today. The interview went well and she did disclose that she stutters right at the beginning. She said the interviewer wasn’t phased at all, which she found comforting. In fact, when she asked the interviewer if she had any questions about stuttering, she was a little bummed out that she didn’t because she was ready to be open and share.

I wished her luck on the second round of interviews and asked her to let me know how everything goes. I thanked her too for remembering me and reaching out.

She said she reached out to a couple of friends locally who stutter but also wanted to reach out to me. She said “you are very well known in the stuttering community.” I can’t tell you how good that made me feel.

You just never know. When we talk about our stuttering and share our stories and put ourselves out there, people listen and pay attention and remember.

And that makes a difference. And means a lot.


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© Pamela A Mertz and Make Room For The Stuttering, 2009 - 2020. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Pamela A Mertz and Make Room For The Stuttering with appropriate and specific direction to the original content. Same protection applies to the podcasts linked to this blog, "Women Who Stutter: Our Stories" and "He Stutters: She Asks Him." Please give credit to owner/author Pamela A Mertz 2020.
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