Monday, November 28, 2011

What Should I Say or Do?

During the more than fifty years that I have lived with a speech problem I have observed many different reactions when I have struggled to speak. There have been people who acted out their discomfort in very demeaning ways, while others remained at ease, regarding and speaking to me like any other human being.


Many of our actions in life should be based on common sense, but experience often plays a big role. Based on my lifelong experience (and a dash of common sense), I have a good take on what can hinder or help anyone who feels awkward with someone who is speech disabled. Some people have a difficult time meeting any stranger, but if that stranger stutters, stammers, or is barely able to talk, then it can become more uncomfortable and one may not know what to say or do.

In an effort to help all of us, I am listing my compilation of guidelines below. These mainly apply to the speech disabled, but many can be used with other limitations too. And, because dealing with “typical” people can often be just as (or more) challenging than dealing with someone who is not, some of my strategies are useful in everyday situations with just about anyone.

The most important thing I wish to stress is that being with someone who is disabled is like being with anyone else. I am disabled but I have the same feelings and desires that are common to all of us. I am different from many people because I happen to have something unusual going on with a part, not all, of me. That one part appears abnormal to the world at large, but the rest of me is like most people. It’s simple. Just treat anyone with a disability as you would treat yourself – with consideration, kindness, and respect.

1. Don’t fill in words or interrupt.
People who are speech disabled often feel isolated and frustrated by all the effort involved to communicate anything. Putting words into that person’s mouth only creates more of the same.

When my speech is at its worst I try to find a rhythm to help me along, but I will lose that flow and have to start and struggle all over again if I am interrupted. I don’t even try to communicate with people who do this to me, and I even ended a relationship because of it.

Instead: Be patient.
Normal speakers should be aware that talking can be painful and take much longer for anyone who is speech disabled, so please wait until your conversational partner is done.

For me, any kind of frustration can trigger stress, and the stress makes my speech worse. If you are truly trying to converse with someone who is speech disabled, they must have time to speak too. Otherwise, they aren’t really part of the conversation – only a non-participatory listener (or sounding board), as I was and resented being for years.

2. Don’t tell anyone with a speech problem to “Relax” or “Slow Down.”
This tactic doesn’t help. If it worked, the person wouldn’t speak the way they do. Saying this to someone only makes the speaker more self-conscious. Additionally, telling them what to do will create more frustration and/or break the flow of speech that they are struggling to attain.

Instead: Set the example.
Over time I discovered that people who are calm and speak slowly affect my speech very positively. When my speech is bad, and even when it’s decent, I don’t want to have to compete to get into a conversation. Speaking more quietly, creating pauses in a conversation, and allowing everyone a turn is a simple show of respect.

3. Never mimic anyone with a speech problem.
Although it sounds preposterous, I have experienced this. In addition, people have winced, looked shocked, and outright laughed at me, Naturally I found this behavior insulting and it made me very angry, but over time I noticed that the people who did this were feeling very insecure.

Instead: Do nothing.
If you are someone who might show embarrassment or alarm around anyone who is speech disabled, try to keep eye contact with them and look as nonchalant as possible. Slow yourself down, take a deep breath, and – if you can -- talk to them. You can kindly (with a smile) say something like, “It’s nice to meet you.” It’s much better to do as little as possible, or nothing, with someone who may be feeling vulnerable – just like you.

4. Don’t focus on someone’s disability.
For many years I felt that my inability to speak normally was my weakest link. I obsessed about it and felt very self-conscious. If anyone focused on my voice, it just added to these feelings.

I once worked with someone who only brought up my speech problem when he saw me. I hated it so I tried avoiding him as much as possible, until one day when I learned that he had a health problem. I tried to raise this topic with him, but I could see that he didn’t want to talk about it, or anything else about himself. Eventually we stopped speaking to each other altogether.

Instead: Talk about the problem, not the person.
If possible, try to discuss the problem. The trick here is not to turn it into something personal, but more of a topic of conversation.

When I first told my husband-to-be, “I have a hard time talking,” he responded by saying, “I could tell. It’s not important to me, but how do you feel about it?” This approach totally relaxed me. His intent, energy, and the tone of his voice were so considerate that I didn’t feel like we were talking about me, but more about the problem itself.

5. Don’t criticize or attempt to correct.
Unless you are a speech specialist, do not do this with anyone who has difficulty speaking.

Nowadays I speak almost normally most of the time. However, in the past when it was almost impossible to communicate, I used "uh" or "um" a lot before I tried to speak. I consciously avoided saying certain words or consonants because they were so hard to produce, and I substituted a lot of words for the ones I really wanted to say. I spent a lot of time and energy setting up my speech to facilitate whatever communication I could offer. If anyone drew attention to it by criticizing or correcting me, it immediately made me angry and even more self-conscious and nervous than I already was. In the end, it was that much harder for me to relax and utter a single intelligible sound.

Instead: Be considerate. It’s okay to say you don’t understand.
If someone is struggling to speak and you don’t understand them or like the words they are using, I suggest that you slowly and, as casually as possible, say something like, “I’m so sorry, did you say ____?” Or, did you mean to say ____?” This way, you are letting the person know that you don’t want to speak for them, you’re interested in what they have to say, and you’re offering them a short response of Yes or No -- something I always appreciated when I could barely talk.

6. Don’t diagnose.
During the forty years that I remained undiagnosed I met many people, even strangers, who were perfectly happy to tell me what was wrong with my speech. Although I never once asked for their opinion, they gave it as if they were experts. However, not one of them was a doctor or in a position to make a blanket statement about the condition of my voice.

Once someone at a party asked me (when I was in my thirties) if I had a stroke. I told her, “No,” but she was convinced that I needed to see a neurologist. Others said, “You must be sick. You really sound it,” and lots of people unabashedly blurted out, “Oh, you stutter. That’s what’s wrong with you.”

I always suspected that all the free diagnoses I received were wrong, and I was right. In the end, the only thing I got was a strong dislike for the messenger and the firm belief that no one, except a specialist, should be diagnosing anyone who is disabled or struggling with a physical problem.

Instead: Share your knowledge.
If you’re reading this blog, you are likely either speech disabled or know someone who is. It’s our responsibility to try to help others, so please share this blog and any other factual knowledge you may have. When I meet someone that I suspect is speech disabled, I say something like, “It sounds like you may be speech disabled like me.” Then I continue to talk with them about my disorder, my blog and its contents. I always urge them, if they’re not already doing so, to see a speech specialist.

If you are not disabled but find yourself with someone who is, you may want to say something like, “Please excuse me, but it sounds like you may have a speech problem.” Then you can continue by telling them about this blog, or your friend or loved one. People with a communication handicap often feel very alone, so the fact that you are reaching out to them and openly discussing the subject is extremely beneficial. Your interest and display of kindness will be greatly appreciated.

7. Don’t blame.
There are some disabilities that may be caused by an accident, but no one is out to create their own speech (or other) disability. There’s no need to be cruel with someone who is already feeling out of control and struggling with a limitation.

Instead: Adopt a positive and compassionate attitude.
There has been an enormous problem of prejudice and negative attitude towards the disabled for centuries. However, since more people are better educated today, and more are exposed to different cultures and experiences, the time is ripe for change.

I believe that perspective is key to dealing with everyone and everything, so I strongly urge all of us to toss out any labels or preconceived ideas we may have about the disabled. Wiping away old notions will give anyone the chance to have an open and positive frame of mind. That approach is the best – it can only help to change the norm, better ourselves, and our world.