Speech Disabilities and Stigmas

Erving Goffman was a twentieth century sociologist who researched social stigmas. He defined a stigma as “an attribute, behavior, or reputation that is socially discrediting in a particular way.” 
(see http://en.wikipedia.org/wiki/Social_stigma#Goffman.27s_theory) Goffman called a stigma towards anyone with a noticeable speech problem discrediting based on the premise that speech is often one of the first traits we notice in another person. A stigma about their speech – even if the afflicted speaker is a Nobel Prize winner — can overshadow and erase everything else.

I am living proof of Goffman’s theory. When I was eleven and lost my ability to speak normally, I felt the sting of stigmas. Actually, it began earlier.

From the time my sister and I were seven or eight years old, my parents labeled us. My sister did well in school and was called “the smart one.” Academically I struggled, but I was pretty and called “the pretty one.” These labels weren’t just given once, but repeatedly throughout our school years and beyond. As children, my sister and I believed whatever our parents told us and, unfortunately, what their labels implied – my sister wasn’t pretty and I wasn’t smart. When my normal speech disappeared, it was around 1960. The word dumb means stupid, but it was used then to also describe someone who can’t speak. I hated that word and I struggled for decades to convince myself and everyone else that that word didn’t define me.

During high school my mother doted a lot on my appearance but often said that I had a lot of common sense. As a typical teenager, and perhaps due to my common sense, I began to question almost everything my parents said. I realized that I wasn’t dumb in the sense of intelligence, and I didn’t have to believe the assumptions that my parents or anyone else made about me. However, by the time I was fourteen I had already heard enough from television, radio, at school and at home to convince myself that the world was filled with people who had preconceived notions about what I could or couldn’t accomplish based on my speech. It was obvious that my speech wasn’t normal, so I began to fear that the quality of my life and the opportunities I had wouldn’t be either.

Whatever my parents said or thought, they prepared me to be self-reliant. I learned stenography in school and quickly became an extraordinary typist who could accurately punch out almost 100 words a minute. My mother was sure that I could do secretarial work, but I was extremely apprehensive about it. I fervently wanted to be independent, but using the telephone was a huge problem and I had no other marketable skills.

I earned my first paycheck from a part-time job I had during high school. I learned to file and sometimes used my steno and typing skills. The head of the company and most of the staff were very nice, but my supervisor often belittled me. She told me that my clothes weren’t ironed properly, and commented about my inability to properly communicate. I was easily intimidated by anyone who mentioned my speech. When she said, “You need to stop stuttering,” I would have given anything to respond but I couldn’t. If I got angry the undiagnosed blockage I always felt in my throat started to feel bigger and made my abnormal speech even worse. As long as I worked there I tried to do my best and prove that I was worthy, but I avoided my supervisor as much as possible.

After high school I attended college, but I wasn’t ready emotionally so I dropped out in my first term. I knew I couldn’t become a teacher, a lawyer, or anything particularly interesting because everything demanded normal speech. My speech ebbed and flowed. Sometimes it was okay. At other times, often depending on my moods and how jittery I might be, it was horrible. I tried to be creative about work when I began looking for a job in the 1960s, but there weren’t a lot of choices.

I was fired from one job because my boss heard me speak on the phone. Forging ahead, I got another job as a secretary in the advertising department of the Chicago Sun-Times. My supervisor was a kind man, but noticed how hard it was for me to speak at times. One day he tried to bring it up but I could tell that he didn't know how. I could also tell that it must have been a problem for him to have me as his assistant.

When I was twenty years old I moved from Chicago to California and began working at the University of California in Berkeley. My job consisted of maintaining library serial card files, some typing, stenography, and a little phone work. Again, there was a woman in the office who constantly voiced her low opinion of me, usually regarding my voice. Often she uttered little biting remarks after I got off of the phone like, “You need to do something about your speech.” I had no idea what to say and, even if I did, I couldn’t. After a few years of working with her and two other kindly women, a co-supervisor stepped in and said something to her. I wish I had the voice to do that for myself, but I was grateful that someone else did. In time I left that job, worked part-time with a lovely woman in another department and went back to college.

After I graduated college I continued working office jobs. They bored me and I wasn’t happy at any of them, but I didn’t know what else to do to earn a living. I worked in numerous departments at a children’s hospital, for a friend who runs a bakery, and finally in the publishing industry.

I felt fortunate to find a position that didn’t make a lot of demands on my speech. Computers were coming into use when I began working in publishing, so email soon became available and I could do most of my work without using the phone much. I spent my time editing and performing other tasks that were more interesting than the basic office jobs I held in the past, but the pay was still fairly low and I felt – as I always had – that my job required less than I really had to offer.

The office held weekly meetings that I dreaded. Everyone had to report on what they were doing and I always tried to make my comments as brief as possible. Usually my voice failed me. Those who were the best communicators often dominated the meeting and I knew that they were also the best paid. It didn’t seem to matter that I could write well, work quickly, or be a whiz on the computer. My inability to speak normally kept me from moving up.

For years I tried to figure out what I could do that would give me enough money and be fulfilling. I envied anyone who had a career they had chosen for themselves. My work remained the one area of my life, regarding my speech affliction, where I felt cheated. I always wanted more.

After working in publishing for twenty years I was in a position to go back to school and learn American Sign Language (ASL). I was fifty-eight years old. Seven years earlier I had finally been diagnosed and started on treatments for my speech problem — a rare and severe speech disability.

I wanted to learn ASL ever since I lost my normal speech as a child, but my parents were against it. I wish I had the opportunity to be a teacher for the Deaf as a young woman, but the stigma my parents held against Deaf people prevented that. They believed that Deaf people were dumb. And in my parents’ minds, the word meant unintelligent.

After completing a two-year program for ASL, volunteering at a Deaf school and a Deaf counseling and advocacy organization, I knew I wanted to work with Deaf children or other children who may not have speech as a means of communication. I was tired of trying to avoid all the stigmas and fit into the normal work world where people are expected to hear and speak and see. For once in my life I wanted to feel relaxed at a job and not worry about someone mentioning my speech. I wanted to be around other people who were without a voice, like me.

I am so grateful that I found a job where I work with both Deaf children and hearing children who have speech problems. As soon as I began working with them to teach ASL and help them to communicate, I knew I had found my calling.

I know that the stigma against anyone with a severe speech problem still exists. Sadly, I continue to meet parents who have lower than normal expectations for their disabled child. Any child who is Deaf or speech disabled should still have a normal or higher standard set for them. If someone can’t speak but is given language and becomes literate, there is no reason to think their mind is less than. Expecting that child to fail or be dumb is not based on truth; it is a stigma, an unfair and misinformed delusion.

I will always fight against stigmas that may lower someone’s expectations and opportunities in life. My prayer is that the children I work with will never feel the sting of a stigma; that they will only know equality and the opportunities that come with it in a world where they can follow their dreams.

Speech Problems and Stress

When one has a speech disability or disorder, there is an inability to produce words and/or fluency for normal communication. Some of these conditions have a known cause. Apraxia is one where uneven speech sounds and/or rearrangements of sounds within a word are produced. Acquired apraxia, which usually occurs in adults, can result from a stroke or other neurological damage. (See www.asha.org) Dysarthria is another where weakness or a paralysis of speech muscles is often due to a stroke, Parkinson’s disease, ALS (Lou Gehrig's disease), head or neck injuries, surgical accidents, or cerebral palsy. (See http://en.wikipedia.org/wiki/Speech_disorder)

Sometimes a speech disorder is temporary. It may occur from the loss of a loved one or a job, or having been the victim of a crime or an unforeseen incident like a car crash. The stress from these emotional challenges may show itself in sudden stuttering or stammering. Such stress may even cause one to temporarily lose their voice.

Unfortunately, there are permanent speech disabilities that have no known origin. Among them are stuttering, cluttering (a form of stuttering where the fluency occurs at an abnormally rapid rate), and my disability – spasmodic dysphonia. As is the case with many temporary speech problems, it is popularly believed that stress exacerbates these conditions. Although unproven, in some instances it may even be the cause.

Many people with my disorder have said that their lives were extremely stressful when their voice and speech began to falter. Like myself, no one could pinpoint the exact moment it felt like stress took control. Yet, the overall sentiment was that the stress they experienced might have started and possibly caused the problem.

I lost my ability to speak normally at the age of twelve. At the time my home was full of tension. I noticed that if I could breathe and relax a bit, my choppy, staccato-like speech would smooth out a little. However, the daily stress of living in a very emotional environment created constant anxiety, and – from the onset – it felt like that tension found its way into my throat and would not budge. I loved my parents, but the anger and arguing that went on with them always made my speech worse. It was sad for me to realize that my throat loosened a little and my speech slightly improved when I was away from them. In addition, I quickly became aware that being with calm people, in a calm environment, or laughing, always eased the tension in my throat and improved my speech a little. 

Even if stress did not cause my speech disability, I am convinced that being tired (a form of stress to the body), anxious, or tense has always made it worse. Now that I have been speech disabled for over fifty years I can see how much I have learned about reducing the stress in my life. I hope these things will help you too.

Think of your needs first. In the past, there were many times I couldn’t explain myself to strangers. That immediately caused a lot of frustration that turned into stress and made my speech worse. Since I never knew if my voice was going to be okay or not, I sometimes carried a pad of paper and a pencil. I didn’t always do this because I grew up with the notion that I had to verbally respond to anyone who spoke to me, even if I couldn’t. However, as I aged and realized how ridiculous and harmful this was to myself, I began carrying that paper and pen all the time. Even now, in our modern technological age of email, texting, and a myriad of forms that can substitute for my voice, I still carry a small pad of paper and a pencil wherever I go. It gives me a feeling of calm and the assurance that, even if the power goes out, I will have some way to communicate with others.

Slow Down. If you have a voice, I suggest trying to speak slowly. This will help you to calm down and find a rhythm that enables you to communicate better. Don’t let anyone force you to speak faster or louder than you can because it will only create stress for you. (More than likely, that person is already stressed out.)

If you are without a voice, listen to the pace of your voice within. If your mind is racing, slowing it down will calm you right away.

Many accidents occur when people are fatigued or speeding. You and your speech or inner speech will be calmer if you don’t rush yourself. Try to stop multitasking and start taking your time. Whether you’re driving, walking, eating, or getting ready for work in the morning, the pressure to do something quickly will rob you of the little pleasures of everyday life. Give yourself the luxury of eating slowly so you can savor your food, and getting up earlier if you need to so you can enjoy viewing the sunrise or sitting peacefully with your morning coffee. These are simple things that add up to a lifetime filled with more serenity, and a healthier voice within and out.

Remove the clutter. I used to be a big clutter bug, but all the piles of books, bills, papers and other items just got in the way. Then, when I began to purge and organize, my life really changed. I instantly noticed that there was calm where it had once felt like chaos. Instead of staring at a barrage of papers that made me feel overwhelmed, I could look at a vase of flowers, a pleasant photograph, or even nothing. Creating calm on the outside, created calm for me within. If you have a hard time creating a calm living place, ask or hire someone to help.

For some, internal cleaning can be harder, so start with the basics. Eat right, exercise regularly, get plenty of rest, and adopt a daily relaxation or meditation practice. Some people begin by changing one thing. They might reduce their intake of caffeine, or walk more, or find a pastime to engage their mind. It doesn’t matter how slow the progress is, or how you go about it; the important thing is to start. All it takes is a little discipline, but the calm you’ll create for yourself will be more than worth it.

Laugh and have fun. A lot of us overwork and stress out about things that are out of our control. Along the way, we forget to take the time to enjoy life, laugh, and simply have fun. Watch a comedy or hang out with someone you think is funny. Go dancing if that suits you, or take up a sport or pastime that will make you smile. If you can’t think of anything, just get out there and try different things.

Above all, love and respect yourself. People with speech disabilities don’t always get this from the society, so it’s crucial that we do it for ourselves. Doing what is right and best for each of us is healthy and essential for anyone afflicted with abnormal speech.

If you have a speech disability, the calm you create in your life will make your condition easier to live with. It may not eradicate the problem, but it will give you the ability to think more clearly, be more productive, and look at life with a more positive point of view.

Denial and Acceptance

In her 1969 book On Death and Dying, psychiatrist Elisabeth Kübler-Ross wrote about coping with grief. She focused on patients who were dying from a terminal illness and introduced a model of five stages to deal with that loss: denial, anger, bargaining, depression, and acceptance. Kübler-Ross also said that people might experience these coping mechanisms with any tragedy or catastrophic loss. According to her, some people may not experience any of these stages, and some may get stuck in one. When I lost my ability to speak I immediately tried to cope through acceptance. My mother went into denial.

It began in 1960 when I was twelve years old. My mother, my sister Ellen and her best friend Ele were with me on that warm summer evening when I lost my ability to speak. We just finished dinner and sat talking with each other. I was on a stool, a few feet from the table where the three of them sat. In the middle of our conversation I started to say, “I”, but an obstruction at the base of my throat prevented it. I kept struggling to say that one sound, but all I could utter was a croaked-sounding “Ah.”

My face must have been in a panic. The girls, about fourteen years old at the time, looked confused and worried. They stared at one another with questions on their young faces. Mommy jumped up and started screaming. “Iris, what’s wrong? What’s the matter?” She repeated herself over and over again, but I couldn’t respond. She looked mad, and her face was practically in mine. I kept opening my mouth to talk, but I couldn’t get a word out. If my life depended on it, I couldn’t speak. Soon, all three of them were talking and yelling. I began to cry and it was only then that some of my normal speech returned.

After months had passed, the same pattern repeated itself (which I remained unaware of for many years). My throat felt tense most of the time, but if I was forced to speak it was worse. In the beginning of my loss this happened mostly with my mother. When she pressured me to speak I’d open my mouth and the bottom of my throat felt blocked so I couldn’t get any words out. I usually broke down at some point and began to cry. Then I could feel something loosen in my throat and I could miraculously speak a little again.

Within a year my speech had noticeably worsened. It was choppy and lacked any kind of normal fluency. Mommy still kept asking me, “What’s wrong?” Then, after awhile, that turned into “What’s wrong with you?” She repeatedly asked me, “Why can’t you speak?” “Um” was about the only thing I could say without feeling any pain in my throat, so I started to respond with “um” at the beginning of whatever I tried to utter. Mommy then responded with, “Why are you saying um so much?” If I could have spoken without any difficulty, I would have told her that trying to explain myself when my throat felt like it was going to snap was beyond my capabilities. Of course, I couldn’t tell her a thing. I couldn’t speak and I had no idea why. For whatever reason, Mommy refused to see that.

My new speaking voice was mostly unintelligible. When I tried to use it I could feel my whole body trying to push out a sound. It was physically painful for me and I know it wasn’t fun to watch either. Yet, Mommy forced me to speak at the dinner table every night. Every time I tried and failed there was silence. After a few moments she would add, “Why are you doing this? I think you’ve created this. You need to stop it.” I couldn’t respond, but I usually wound up crying and the pattern reappeared.

During all of this my sister remained calm and supportive. My father often didn’t say much. Sometimes he tried to end Mommy’s interrogations, but she wouldn’t stop. The worst occurred one night when she blurted out, “I think you’re crazy!”

Most of the confrontations with my mother around my speech happened while I was in high school, a difficult time anyway. When I was sixteen I saw a speech doctor, but only because my wonderful high school French teacher intervened. The doctor didn’t do anything and thought I was fine, so Mommy decided I was too. Only, my speech wasn’t. It was around that time that she began saying, “Iris. I think this is just a phase you’re going through. There’s nothing wrong with your voice; I’m sure this is something you’ll grow out of.” With this in mind she came up with the idea that my speech would improve if I answered all the phone calls to our house.

When the phone rang I almost flinched. I hated it and already knew that I would fail each time I tried to use it. I can recall picking up the phone many times and hesitantly saying, “e-ello.” My throat felt frozen and it was impossible for me to make an H sound. On the other line I’d frequently hear, “Cat got your tongue?” or “What’s with your speech?” I couldn’t say much beyond, “Ah-ah d-on’t kno-ow.”

As time passed I got more and more angry with my mother. I had been so close to her before my speech affliction, but her denial about it changed that. It hurt each time I saw the look of doubt and disappointment in her face when I couldn’t speak, but I became weary of her judgments. Fortunately, because I had a fighting spirit and an inborn belief in myself, I began to question her. I knew there must be something else going on with my voice, so I could never understand why she didn’t too. 

I have shared my story with many Deaf adults who grew up in households where no one learned sign language. When I heard their stories, they conveyed the same confusion and sadness that I felt for so many years. One young Deaf woman signed, “I had to learn how to lip read when I was little. I know a lot about what other people in my family think, but they hardly know me.” Another acquaintance told me, “My mother has never accepted the fact that I am Deaf. It’s broken my heart that she refuses to see who I really am.”

My mother died years before I was diagnosed at the age of fifty-one with a severe speech disability. The moment I was diagnosed I immediately thought, “I didn’t create my inability to speak. I’m not crazy like Mommy said.” I would have given almost anything to talk with her that day. More than anything, I wanted Mommy and any parent of a child who has some kind of disability to understand that their child needs to be accepted for who they are, no matter what.

Losing one’s ability to speak is enormous, but it or any other limitation doesn’t have to lead to the loss of those they most need and love. If you are close to someone who is speech disabled or afflicted with a notable loss, I hope you embrace them for all that they are. Accepting the reality of another’s situation creates peace. It doesn’t mean that anything will ever change when it comes to that loss. It means that those afflicted will feel loved, and they will not have to meet the challenges of that loss alone. 

Giving

For anyone who is speech disabled, the holiday season can be a difficult and challenging time. It is a festive period, filled with lots of social activities and the unspoken pressure for all of us to be “merry.” However, if one can’t fully participate because they have no voice, or the voice is weak, painful to use, or limited in its functional ability, the holidays can be a lonely time.

Limited for decades by my inability to speak normally, it took me a long time to learn how to have fun during the holiday season. I used to dread it, feeling anxious and worried about each social engagement. I was always preoccupied with my lack of a normal voice and, because of this, I completely missed the beauty of the season for years.

Growing up, almost everyone I knew was Jewish. My sister and I received presents during Hanukkah and even on Christmas morning. Our observance of Hanukkah taught me about my heritage. It gave me a deep sense of family and the best that it represents. However, my parents still hosted a large gathering on Christmas day (to celebrate my Uncle Irving’s and Aunt Sophie’s birthdays), but I had very little understanding of Christmas. As a child, I only knew that the late fall and early winter meant there would be lots of big family get-togethers and some gifts.

I didn’t know anyone who celebrated Christmas until I was around eight years old and became friends with Christina Olsen. The Olsen family was one of the few on our block who weren’t Jewish. I loved going to their house all the time, but it was a special treat during the Christmas season. It wasn’t so much about their beautifully decorated tree and the smell of freshly baked cookies in the air; it was about the feeling of warmth and sincere welcome that greeted me when I walked through their door. The love of family in my home was certainly present at the Olsen’s throughout the year, but during the holidays there was also something else.

As a teenager I began going downtown in my hometown of Chicago to see all of the Christmas decorations. It was fun to get lost in the crowds, gaze at the beautiful window displays, and see what the stores were selling for Christmas. There were so many things I would have loved to buy, but I never got anything. What I came away with, though, was that same feeling I picked up in Christina’s house. It was a spirit that I could never quite describe. I didn’t fully understand it then; I only knew that it made me feel good and I wanted to be a part of it.

When I moved to California at the age of twenty, I had been struggling with my inability to speak normally for almost ten years. I always forced myself to be outgoing and I made many friends, lived with people from all walks of life and of different faiths. As I formed close bonds with people who celebrated Christmas, I was invited to attend their holiday parties. Instead of getting excited about all the social activities, I dwelled on my speech problem. When November approached I often wondered, “Will my voice be good enough to enjoy myself this holiday season?” Focusing on my most vulnerable area, I usually was not very merry. I was anxious. At times I was depressed.

In my thirties I began making holiday gifts for a few good friends and loved ones. I baked cookies, made homemade apple butter and other concoctions, or had people over for hot cocoa or a nice winter’s meal. I didn’t feel like I had to spend a lot of money; just give something from the heart.  As I became a more serious cook and baker, I noticed myself looking forward to the holiday season. If my voice was gone or not all there, I might still get anxious about going to social gatherings, but it didn’t bother me like before. I no longer obsessed on myself; I was too busy figuring out what I could make or do for others.

Over time I understood that the spirit of the holiday season was all about giving. That was what created the warm, cozy feeling at the Olsen’s house and the joy among the bustling crowds of shoppers in my youth. Eventually I realized how wonderful it was to give. I couldn’t help but notice how any act of helping, sharing or giving altered my mood in an instant, from somber and dark to happy and light. It was like magic.

Recognizing how much giving gave back to me, I began to look for opportunities to do it every day. I now try to give through my work, with friends and loved ones, and – often– with people I don’t even know. It can be as simple as listening to someone who needs to vent, or picking up an object that someone has dropped, or letting another driver have the right of way because they seem to need it.

My voice has been gone many times over the holidays and at other social occasions. I can feel it starting to go this year before Christmas, and I know that this will be the case for the rest of my life. However, when I focus on others and what I can do for them, I forget about what I don’t have. Growing up unable to speak, there were many times I felt almost useless. The simple act of giving has changed that. It is a constant reminder that each of us has something to offer.

If you suffer from a speech or other disability, I hope you give of yourself. Giving immediately connects us to others, and creates a sense of unity and belonging. It certainly is one of the best things I can do for me or anyone else. It is a gift that gives to us all.

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. 

Coping with Loss

Over the four decades that I went undiagnosed, lots of people were perfectly happy to tell me what the problem was with my speech. Many said, “You stutter.” Some said, “You’re nervous. All you need to do is relax.” And, one person very close to me said, “You’re crazy! You’ve created this monster!” My gut feeling told me that none of these people knew what they were talking about (and they didn’t), but it still hurt. I didn’t want to be labeled.

When I finally got an official diagnosis in 1999 I was incredibly grateful. Yet, when my speech doctor said, “Iris, I want you to understand that you are severely speech disabled,” I had numerous reactions. My first thought was, "Good. I’m relieved. There’s actually something wrong physically, so it’s not in my mind. I’m not crazy!” But, I also thought, “Disabled! Is that really what I am? Is this my new label?”

According to http://www.merriam-webster.com/dictionary, disabled means “incapacitated by illness or injury. Also, physically or mentally impaired in a way that substantially limits activity, especially in relation to employment or education.” My speech problem never made me feel incapacitated and, even though it affected my employment a lot, impaired didn’t quite fit either. When I thought about it, only one word came to mind. Loss.

When my abnormal speech first emerged as a pre-teen I felt a tremendous loss but I didn’t know what to do about it. My moral support came from a handful of my closest friends and family. My mother had a terrible time dealing with my dysfunctional voice, so the word “problem” wasn’t even used in our home. People didn’t see medical specialists in the 1960s, and no one accurately knew of a name for the way I spoke. The loss of normal speech turned my life upside down, but from the moment it began I knew that all I could do was try to cope.

Even though I was only twelve years old, losing my normal speaking voice was mostly about practicality. I still had to get out of bed in the morning and face the day. I had to go to school, hopefully find and keep a job one day, have a social life, sleep at night, and be at peace when I saw the face staring back at me from the mirror. I had to figure out how to go about living my life while operating at a loss.

Without a diagnosis, I obsessed constantly on my voice. I kept trying to find ways to control it, but nothing worked. Then, during my teens I realized that there were other things I could control and change. I couldn’t change how I appeared to the outside world when I struggled to express myself with my unintelligible utterances, but I could adjust my attitude about it; about myself. And, in changing my attitude, I could change how I appeared from within.

My attitude slowly improved, but I still obsessed on what I considered my weakest link. At the age of twenty I decided that I needed to work harder on myself so I began a daily ritual. Looking in the mirror each morning, I forced myself to focus on my strengths. This took honesty and it was hard because so many negatives kept getting in the way. I saw all kinds of things about myself, besides my speech, that I didn’t like. I thought, “I’m judgmental; I can be overcritical; sometimes I’m too serious; and I’m not always patient.” Worst of all, though, I saw how hard I was on myself.

Over time my practice helped me to become more mindful. When I thought anything negative, my mind’s eye pictured myself sweeping the thoughts away. Slowly, I became more positive, enjoyed life, and learned to be easier on everyone, including myself.

Humor helped tremendously too. Instead of seeing things with a serious viewpoint, I adopted a lighter, more objective approach. In time I even began to smile endearingly at some of the frailties and shortcomings inherent in all of us. And, everything became much easier when I started to remind myself that we are all just human.

When I first began to work on myself I thought my lot in life was so small. I didn’t see that I had anything going because all I thought about was what I didn’t have. Looking back, I can now see how much I was given; how much more there has always been to me beyond my physical voice. Today I no longer have a problem referring to myself as speech disabled. The sting that labels once carried for me is gone.

It’s more than ten years since my diagnosis and the start of my treatments. I’m extremely fortunate to now have decent speech most of the time. I used to think that if I could ever speak again, only loving words would flow from my mouth. Unfortunately, I’ve shocked myself many times for not living up to this unrealistic image. Yet, this reminds me that I’m human, or – as I like to call myself -- a work-in-progress. It also reminds me that I’ll always need to work on trying to become my best. I know that as long as I’m alive, my internal work will go on.

Since I started getting treatments, my voice has never been as bad as it was before I was diagnosed. However, there are times when it reverts back to a shaky and splintered form. My sadness surfaces when this happens, but it is usually short-lived. I know that, no matter what, I’m okay and I’ll find a way to cope. Often, what helps the most is reading what others have written about their struggles. One of my favorite works is William Ernest Henley’s poem, “Invictus.”

In Latin "Invictus" means unconquered. Henley’s work refers to his fight against bone tuberculosis. He contracted the disease as a boy and within a few years it spread to his foot. This was in the 1860s when physicians could only save him by amputating his leg below the knee. It was amputated when he was seventeen. In spite of this (and I tend to think because of it), Henley led a full life until he died at the age of fifty-three.

Henley couldn’t control the disease or its progression, but he later wrote his inspiring poem about it. His words gently remind me that whatever loss I feel, and however weak I think I might be or appear on the outside, I am still strong within.

Invictus
“Out of the night that covers me,
 Black as the Pit from pole to pole,
 I thank whatever gods may be
 For my unconquerable soul.

 In the fell clutch of circumstance
 I have not winced nor cried aloud.
 Under the bludgeonings of chance
 My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.”

Another Voice

Note: Big D for Deaf refers to people who identify themselves as culturally deaf. They will have a strong Deaf identity, attend schools for the Deaf, and mainly associate with other members of the Deaf community. Small d for deaf refers to the condition as well as to deaf people who identify more with the hearing or mainstream, and regard their hearing loss only in medical, not cultural, terms. From deafness.about.com


When my speech problem emerged just before high school, I was desperate to find another way to communicate. With the voice as my sole means of expression in 1960, it was no wonder that I wanted to learn ASL, American Sign Language.

As a hearing child of hearing parents, attending a Deaf school was out of the question. In those days my parents had a perception that the deaf were inferior. Many misconceptions about them resulted from deaf peddlers back then – probably the only deaf people that most hearing people knew about.

I remember seeing deaf peddlers in the street in the 1950s, and some of them even showed up at our front door. The peddler would present their card. It often had the ASL alphabet printed on it and a phrase that said something like, “I am deaf. Can you please help me?”

All I knew about the peddlers is that they didn’t speak or that it was very hard for them to do so, just like me. So I liked the idea of going to school with them or anyone who was deaf. I saw how they used their hands to say things, and I wanted to learn how to do it too.

I wasn’t able to learn ASL until much later in life, when I was 58 years old. By then I had been diagnosed for my speech disability and was getting treatments for it. Yet, my treatments didn’t always work, or I might have to wait months to get one. I knew that, without medical intervention, I could never speak normally so I still wanted to learn how to use my hands to express myself; to simply replace my voice with another one.

As hard as it was for me to learn ASL, I could see how easy it was for many of my younger, college-age classmates. They made me think back to when I was their age and earlier as a teenager, struggling to communicate without speech.

Throughout my teens, I often asked myself, “How will I earn a living?” Even though I excelled at typing and stenography in high school, I questioned, “How good of a secretary can I be with my speech problem? I can hardly use the phone. What am I actually capable of?” It was obvious that I couldn’t teach or do anything that relied on my voice.

While studying ASL, I wondered how different my life would have been if I had learned it early on. Perhaps I could have become a teacher of the Deaf, and would have been spared the anguish I experienced whenever I was forced to speak at school, in social situations, interviewing for a job, working at a job, trying to use the telephone, or even out with friends. If I attended a Deaf school growing up, would I have found the support and understanding that I felt lacking in my youth and for much of my life? Would I have become more confident? I don’t remember ever doubting my intelligence. But, throughout most of my life, I felt that I couldn’t express it.

In one ASL course, the instructor discussed how the Deaf suffered a history of being forced to speak in schools and in mainstream society. He signed, “Can you imagine that the Deaf were forced to go to schools where ASL was forbidden and they were made to speak?” Even though his question was rhetorical, I raised my hand. I told the class interpreter, “I u-understand this. I’ve h-ad a speech disability s-ince ch-ildhood and I’ve been forced to s-peak all of my life. I f-feel that I’ve l-ived with the s-ame problem.” My instructor stared at me, looking shocked. He asked, “You’re hearing but you can’t speak?” I was able to respond directly to him this time and simply signed, “Yes.”

This common inability to speak, while often being forced to do so, was the connection I always felt towards the Deaf. Yet, I was a hearing adult who only knew other hearing people. Was this shared experience with the Deaf what made me feel that I might have a lot in common with them? I was curious to find out.

My ASL program involved volunteer work for one semester, but I extended it. I worked for almost a year with a Deaf advocacy organization, for six months at a school for the Deaf, and I also studied privately with a Deaf tutor for almost a year. The majority of people I met were always patient and glad to help me with ASL, but the best part was the special closeness I almost always felt after I told them about my speech problem and our unique commonality.

No Deaf person I met ever knew a hearing person who couldn’t speak, so I was something of a novelty. I’d often sign with them about my take on the ASL sign for the hearing, where the index finger circles outwardly from the mouth as if to indicate the utterance of words. I would say, “I think this needs to be changed. It has nothing to do with me!” They would laugh and tell me how that’s part of the language so it probably won’t change anytime soon. Then, I’d usually add, “Seriously, I always wanted to learn sign language because it was so hard for me to speak. You know, there are hundreds of thousands of hearing people in the world who, for one reason or another, can’t use their voice. Wouldn’t you love to see them learn to use sign language too?” No one ever laughed at this idea. They readily agreed.

Learning ASL did give me a new friend from all the Deaf acquaintances I made along the way. Although I met Laurie because I know ASL, our friendship has little to do with the fact that she’s Deaf or that I’m hearing. Like all of my other friendships, it is based on mutual respect, a strong sense of humor, and an ease and joy of being in each other’s company. The remainder of my personal life is in the hearing world.

Luckily, my ASL studies brought me employment with preschool Deaf and hard-of-hearing children. Here I am often with other adult hearing ASL signers, as well as hard-of-hearing and Deaf adults. The goal of my work is to teach the children ASL, as it will be their first language and become their native tongue. In this arena I may witness a child use their hands to communicate for the first time, and I am reminded why I wanted to learn sign language in the first place.

In the hands of an expert, sign language can be a thing of grace and loveliness. For me, though, its greatest beauty lies in giving a voice where there was none. As a Deaf instructor once said, “If others rely on your speech and you have none, it’s impossible for them to realize your strengths.” Thank goodness for the strength of a people who cannot speak, and their incredible creation of another voice.