Different reactions to PWS
Hi! My name is Julianna Arellano and I’m a senior at CSUF studying speech-language pathology. I am interested in knowing if you have gotten a negative reaction to your stutter from someone you were speaking to? If this has happened to you, how was that experience and how did you handle the situation? I would like to think that everyone is accepting and patient with PWS but that might not always be the case. I look forward to your response, and hopefully a positive one!
Two years ago, I had a negative reaction from a nurse when I had an appointment with my primary care physician. When she asked my to verify my birth date, as I said 12, as twa-twa-twa-twelve, she laughed. As I continued on to the 13, as thir-thir-thir-thirteen, she laughed again. She then said “it’s not a trick question”.
I was stunned and asked her point blank why she had laughed. I told her I stutter – that it was just stuttering she heard.
Then she said she wasn’t laughing at me. I said, “well, you are you laughing at? it’s just you and me here”.
As you can imagine, I really had a problem with this. Even after telling her I stutter, she didn’t apologize.
Anyone in customer service needs to be respectful of all customers, of all differences. But especially in health care. It should be a given that a nurse is not going to laugh at a patient.
I made a complaint about it a few days later, when I spoke to someone high up in the food chain with the medical practice. I had the chance to help them create a brief 2 minute video to be included as part of online new hire training for all staff in their medical practice.
But the nurse never apologized. She may have thought she had done nothing wrong.
Pam
It’s been a very long time since I’ve received a negative reaction to my stuttering, but there were many instances of this when I was younger.
Usually I didn’t react much, except ignoring the person and avoiding the person afterwards.
I’ll come up with five of those instances from my memory (there are many more).
– After my mother passed away, there was a large gathering at my sister’s house for her shiva (the Jewish memorial week). One woman who I didn’t know began a conversation with me. I blocked. “Tough day, huh?” she said to me. I began to speak again, and blocked again while getting some words out. “Wow, this must REALLY have been a tough day for you!” I had enough of this, and just moved away from her to talk to others.
A short while later, I was speaking with a group of people, and she came to join the conversation. Then she realized her error, and apologized to me profusely. “Oh, I’m SO sorry! I really didn’t know! Please forgive me. I’m SO sorry!”
– Many years before, I was at a shiva for an uncle. My stuttering then was very severe with really long blocks. My grandfather introduced me to a friend of his who I didn’t know. My grandfather’s friend started talking to me, but I was just unable to respond, due to very severe blocking. The man turned to my grandfather, and while looking at him, pointed a finger at me. “What’s wrong with your grandson there? Why can’t he talk?” My grandfather, who didn’t know much about the nature of stuttering, tried his best to explain. “I paid for him to go to a doctor in New York and he learned to speak beautifully. He came back, and I understood every word he said. But he has forgotten what he learned. He should go back to that doctor, and I’ll pay again. But this time he should write down what the doctor says, so he won’t forget!”
[The “doctor” referred to was Martin Schwartz, a speech scientist who taught an airflow technique. His technique worked for me for a while in some situations, but I couldn’t maintain it in the long term. I never did go back to him, but experienced some later success with other therapy programs. My grandfather didn’t understand that relapses aren’t simply a matter of “forgetting”.]
– Shortly after I began graduate studies in music, a professor of mine called me into his office. He told me that the department head had asked him to have a talk with me. The professor complained and ranted about my stuttering. “Don’t you realize that you can’t make a living from composition except to teach? And don’t you realize that with your speech, you can’t teach anybody anything? You can’t even say your own name, for crying out loud! I’ll be blunt – what the hell are you here for? What do you expect to do afterwards?”
[I don’t remember what I responded, or even if I was able to respond at all. But interestingly, five years later, the department did hire me to teach an advanced graduate course in music, as no one on the faculty had the mathematical background necessary to teach it. So I did prove that professor wrong.]
– As an undergraduate, I was at the university’s pub. (I seldom drink, but was at the pub mainly to socialize.) A woman who didn’t know me began to converse with me. After a minute or so of my stuttering, she asked me: “Do you have some kind of a disease, or are you just a very nervous person?” In that particular situation, I did attempt to explain that I stuttered, but I’m not sure she understood. Needless to say, I moved away from her rather quickly.
– Also on a different occasion at the same pub, a classmate of mine got quite drunk. He asked me: “Why? Why? Why do you stutter so much? Why? Were your parents mean to you or something? Did you hate your mother or something? Why?” I think I attempted a brief explanation that no, that’s not the reason. But I didn’t go into further details – he was just too drunk for that.