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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.


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© Pamela A Mertz and Make Room For The Stuttering, 2009 - 2019. 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 2019.
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