Being Disabled Doesn’t Mean I’m Always Tolerant

The holiday season is often hard for me. If I am unable to fully participate in all the socializing due to my speech disability, or if I feel like I’m on the outside around Christmas because I was raised in the Jewish faith, I sometimes get a “bah humbug” attitude like Ebenezer Scrooge. I try to have good intentions, but during the winter holidays I haven’t always shared, let alone spread, the joy of the season. This year, however, something happened that turned things around.

It started when I received a monthly calendar listing meetings that I often attend. Almost instantly, my eyes spotted that Christmas was the only holiday listed for the month of December. When I didn’t see Hanukkah, Kwanza, or any other holiday, I didn’t just feel bad because those days were excluded. I could sense myself almost becoming indignant.

After mulling it over for a few days I decided to contact the woman who normally emails the calendar. When I asked about it I wrote, “Even though I don’t practice Judaism, this is an old wound for me that has never fully healed.” She quickly replied and said, “I’m sorry you felt slighted. Someone else sent the December calendar. I think they were in a rush and just downloaded it from the Internet. When I do it I try to add in all the holidays so everyone is informed.”

Her response made me feel better, but I was still bothered about something. My reaction. I had immediately spotted the one thing that makes me feel left out. I thought, “Maybe I’m the one who is making myself feel excluded.” It’s almost as if I was on the lookout for something that could bug me so I could pout about the holidays. I’ve always been against anyone acting like this, anyone who might be self-righteous and indignant. But, if I want everyone else to be open-minded and respectful about my heritage or disability or anything else that might be different about me, I need to act the same way.

This made me wonder if I really was as open-minded and respectful of others as I always thought. I remembered the times when I traveled and lived with people who were worlds apart from me in their culture and frame of mind. We embraced each other’s differences. In Spain I met lots of people who were interested to learn about Jewish holidays and traditions. And I ran around with them to all the special events that took place in their churches. We shared experiences that were rich, diverse, and bonded us.

Over the years I have also reached out to people, even strangers, about my speech disability. I have met many people who didn’t understand what it was like for me to be unable to speak or have a difficult time communicating. But, after connecting with them, I realized that it wasn’t because they didn’t want to. They simply never had anyone share the experience with them. They were open and more than willing to learn about what it is to live without a useable voice.

But, now, my reaction to the calendar made me feel like I was nitpicking. Why was I so judgmental when that was the last thing I wanted from anyone else?

Like Scrooge, I believe my feelings of being left out began in childhood. I grew up in a segregated city and learned early on that my culture was different from others in my city and around much of the world. Then, not many years later when I lost my ability to speak normally, my sense of disconnection simply deepened. Fortunately, as a young adult I moved to one of the most diverse and tolerant cities I know. Perhaps, though, a part of me never completely moved on.

Thinking about this helped me to see that sometimes I have unconsciously used my cultural heritage or disability to cut myself off from others. When I’ve done this I know that I have felt the last thing I want to feel -- intolerant. Seeing Christmas as the only holiday on a December calendar shouldn’t create negative feelings in me. But the fact that it did made me turn my thinking around and focus on the good things that happen at this time of year. I can share and spread joy, and I can even light up a tree in my house if I like too.

In fact, the other day someone unknowingly helped me to start feeling a little holiday joy. As I left my local grocery store, I saw a Salvation Army bell ringer standing outside in the cold. When I walked by her, she looked me in the eye and casually said with a big smile, “Merry Christmas.” I didn’t flinch or get upset in any way like I might have before. Instead, I simply smiled back and said, “Happy holidays to you too!” I have to admit; it felt pretty good.

       

Giving Thanks for Everything My Disability Has Taught Me

Oprah Winfrey is quoted as saying, "Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough.” In this month of celebrating Thanksgiving, I am thinking a lot about Oprah’s words. I can honestly say that I understand them now. But I didn’t always.

I began making the effort to develop my sense of gratitude about seven years ago. It was a time when I realized how much resentment I had because of my speech disability. I was getting annoyed with everything then, but especially with people who I thought of as “normal” and had no clue what my life was like. I compared myself to them and doted on how lucky they were because they didn’t have to go regularly to a doctor and rely on medical treatments to be able to speak. As these feelings deepened I knew I had to do something. I hated myself for feeling jealous and immersed in self-pity, so I forced myself to consciously focus on the good things in my life. I began to mentally note at least one thing I could be thankful for each day.

Over the years, I knew that my daily practice of giving thanks helped me tremendously. My negative feelings disappeared and I gained a much greater sense of peace and contentment. However, this year I had an opportunity to really put my daily practice of giving thanks to the test. My wonderful surgeon, who I have come to rely on to “fix” my speech problem, was unavailable. I have seen him at least twice a year since 1999 and my last treatment with him was January 2012. By mid-May I knew that my voice was going and it was time for another treatment. As usual, I called his office for an appointment but they said my doctor was unable to work and they didn’t know when he was coming back.

If this had occurred ten years ago, I would have gone into a complete panic. I would have thought that my voice would immediately revert to being as bad as it was before I began treatments. However, by working on my gratitude, I had changed. I was calmer and more self-assured. The act of reinforcing a positive emotion in myself everyday over the years taught me that I would be fine and I could deal with whatever might happen.

My voice worsened over the summer. Instead of panicking I simply thought I would check in again with my doctor’s office. When I called in August they said that my surgeon was still out but there was another doctor who could perform the procedure I needed. I went to him with optimism and the hope that all would go well. It didn’t.

Still, I kept up with my practice of giving thanks each day. I gave thanks for understanding why my treatment worked or didn’t, and especially for knowing that – even if I never got another treatment that worked – I would be okay.

By September it was much harder to control my voice. The sense of it weakening made me feel weak emotionally too. Yet, I knew that my problem wasn’t going to kill me. I also knew that if I kept thinking positive thoughts and reminded myself of how much I had, the calm that this created would create better speech. If I had to, I could whisper to tell people that my voice was gone. At work I could use American Sign Language, something I made sure to learn in case my voice ever went and medical intervention no longer worked for me. I had lots of psychological tools and other voices that I had learned about. It made me feel very grateful to know that there were lots of things at my disposal that could help me.

More time passed and my voice worsened. I could feel a twinge of the pain I used to have when I tried to speak and couldn’t. At one point I felt myself bordering on depression but I kept giving thanks. I was grateful that I could work and function, that my body and brain were intact. I didn’t like feeling out of control with my speech, but I was grateful for the other things that gave me a sense of strength and I focused on them. In particular, I kept reminding myself of the fact that I had managed to live with my disability for almost forty years without any diagnosis or treatment. 

In October I decided to call my doctor’s office once more. I was thrilled to hear that my surgeon was back at work. A part of me, though, was almost sad. I knew it was best for me to get treated and be able to speak without any pain, but not getting treated had taught me so much and I didn’t want that to end.

Going without medical intervention pointed out just how much I had improved. I saw that it had been ten months since my last treatment, the longest I had gone in thirteen years since my first one. Although I had struggled with my voice problem, I didn’t fall apart. Most importantly, I no longer hated my speech disability or dreaded what I would be like if I couldn’t get medical assistance for it. Instead, I was grateful for everything I learned from my disability. I finally realized that it is the one thing that has taught and continues to teach me so much about myself and about how to live a full and happy life. 

Different Experiences with the Same Speech Problem

Speech problems are like sizes. One doesn’t fit all. Even though I may have the same condition as you, our experiences with it might be quite different.

When my speech problem began in 1960 I was around twelve years old. In order to communicate I felt like I was groping in the dark. Since there was no such thing as text, email, or a phone application to substitute for my voice, I concocted ways to try and convey what I wanted to say. My methods were not very good.

Because I was so anxious to try and speak normally, I usually spoke too fast. I know I simply wanted to get it out and over with, but the speed made me more tense and made the problem worse.

Frequently another thing I did was to try and force out words. There were so many vowels and consonants that I couldn’t say so I made the effort to push them from my throat. When I did this I contorted my face and my whole body often became involved. Sadly, I was rarely understood and I could also see how uncomfortable it made others to watch me.

At the age of fifty-one I was finally diagnosed with a severe speech disability, almost forty years after my problem began. My doctors told me that, with treatments, I might be able to speak fluently again. However, they also said that I would need a lot of speech therapy. By this time, so many years and bad habits later, I didn’t know how to speak normally. I couldn’t even remember what it felt like, so I would have to unlearn everything I had been doing and start from scratch.

Around the same time I also began meeting other adults with my disorder, the adductor type of spasmodic dysphonia (SD). I was thrilled because I had never met anyone who had my condition or sounded like me when they spoke. I thought everyone I met would understand my situation and what I had been living with for so long, but I was wrong. 

The first thing I noticed was how calm other people with my form of SD appeared when they talked. I didn’t see anyone speak fast, contort their face, or use their body to force out words. No one looked or sounded anxious. Even though their voice had the same choppy and strangled sound as mine, their efforts to communicate were far from what mine had been most of my life.

I also heard from people online. They told me about careers they had to give up because of SD. Their voice had been an integral part of their job so they had to find other work that didn’t involve speaking. I truly sympathized with their sudden loss, but I noticed that a part of me envied the fact that they ever had their job in the first place. I wasn’t proud of myself for thinking, “You’re so lucky you got to do that job. I could never even pursue or think of doing something like that.”

The more I listened to other people’s stories and heard the responses in my head, I realized that we shared the same voice problem but were on opposite ends of it. As I looked into it deeper I became aware of a number of things.

First, I never met anyone afflicted as young as me with my disorder. Secondly, none of the adults I encountered had gone longer than two years before getting a diagnosis. And, no one seemed stressed about speaking like I always had because they were used to doing it. They had been speakers all of their lives, something I was not. Fortunately, because they had received a diagnosis fairly quickly, they didn’t have the time to form bad habits either. We shared the same speech problem, but our histories were worlds apart.

In spite of our differences, though, I could see that we definitely shared similar feelings. Even though those who were newly afflicted had access to things I didn’t have like technical devices, advanced medical procedures, information and education, they were still emotionally challenged by what always challenged me. They no longer wanted to speak much, use the phone or read aloud. Their lack of fluency made them feel isolated and spend more time focused on their loss. Suddenly they found themselves feeling anxious about work, relationships, and everything that makes up a full life. I experienced all of this, but I suspected there might be something else they were grappling with — something I considered one of the toughest things about having a speech disability. They had to accept it.

One day, when I was in my thirties, still undiagnosed with no name for my abnormal voice, I simply accepted the fact that I had to stop struggling with it. I realized that it was a part of me and I might never be able to speak normally again. I needed to stop fighting it and learn to live with my limitation as best I could. Once I did this, my anger and sadness began to wane. Even though I knew that my speech condition would continue to play a major role in what I couldn’t realistically do, accepting it gave me a sense of control and freedom to explore what I could do.

It is never easy when someone is afflicted with a speech or other disability. However, after living with my disability for over fifty years, I would advise anyone with a similar problem to come to grips with the reality of the situation as soon as possible. Once I did this it became obvious that I needed to be more open-minded and creative, and approaching life with this in mind has proven to be a great thing. It has pushed me through doors I may not have gone through, and it has set me on paths I may not have initially chosen. Accepting my speech problem has taught me how to go with the flow, and embrace and learn from whatever comes my way.

Coping with a Speech Problem Through Creativity

People who create something out of nothing are often called artists or entrepreneurs. I don’t think of myself as either, but creativity has always played an important role in my life. It particularly became a source of strength and a means of coping when I lost my normal speech around the age of twelve in 1960.

From as far back as I can remember I loved to sing. At eight years old I started taking piano lessons and, once I could play well enough, I accompanied myself. Fortunately, even when I lost my normal speech, I could still sing. I continued to work on both mediums for decades, got my Bachelor’s degree in music and, ironically, became a professional singer. However, because I basically had no useable speaking voice, music was more than something I loved and studied. It fulfilled me within, gave me the outward ability to offer something I found beautiful and, most importantly, provided a way to express myself.

In my thirties, while I was singing in the San Francisco Opera Chorus, I began to study Flamenco. At first I learned to dance different Flamenco forms and a few years later I studied how to sing them. As I became more passionate about it, I stopped my classical singing and devoted myself to Flamenco. I went on to perform locally as a Flamenco singer/dancer for close to fifteen years. During this time I went back and forth to Spain to study, visit, and I wound up living there for a short while too. I made friends for life and have fond memories that will last forever. The entire experience was exhilarating but the most engaging element was the creative process. It gave other parts of me a means to convey something my broken speech never could.

I stopped performing Flamenco when I was forty-eight. My speech problem remained undiagnosed but I could feel that my singing voice was diminishing. I noticed that my volume had lessened and after a performance I barely had any voice for a week or two. My body was getting more tired, but the exhaustion mostly showed up in my voice. As a performer I wanted to make my exit while I still sounded and looked good, so I did. Yet, though I knew this was the wise thing to do, without a creative outlet in my life I felt empty.

Seeking to fill the void, I seriously began to study the art of cooking. Looking back I’m almost glad that my mother was such a horrible cook. My father was great in the kitchen but he didn’t want to bother, so my sister and I learned early on to make dinner and everything else. At the age of nine I was already preparing meals for our family and experimenting with desserts. Since then I’ve never stopped eating or trying to concoct wonderful dishes. After taking different classes for more than a year my meals got better and I found the whole process both stimulating and relaxing. Beyond the partaking of it, making good food has proven to be extremely fulfilling as a creative way to satisfy my own needs and express my appreciation and love.

At the age of fifty-one I was finally diagnosed and told that I have a severe speech disability. After almost forty years of searching for an answer, I was incredibly grateful to understand my problem. However, I felt overwhelmed by all the feelings that my diagnosis brought up and fell into an emotional slump. I had to do something so I turned to a creative endeavor I dabbled in since my twenties. I began to write and I’ve been doing so ever since.

My diagnosis came at the end of December 1999 and I started to write almost daily in early 2000. At first it was only for me. However, the more I learned about my condition and thought about everything I learned or had experienced from it, the more I wanted to share my knowledge. The blog you are reading now is a result of this. Through my blog I have been in touch with people who are newly afflicted with my condition. With others who remain undiagnosed, my writing has connected us and provided me with an opportunity to offer them suggestions on how to proceed and deal with their speech problem. Like all the other creative pursuits, I take my writing seriously and feel incredibly lucky to be able to do it. On a personal level it has helped me tremendously, but the rewards are much greater when I hear that it has enlightened or helped someone else.

The worst times regarding my speech problem have always been when I felt I had no way to express myself. None of my creativity has ever fully substituted for my voice loss, but the process has helped me to temporarily forget it and pursue and enjoy other things. I was recently reminded of this when I attended a collage party. I went there with the idea that, since I’m not a craftsperson, I won’t be very good at making a collage. However, as in all creative activities, being good isn’t the point. In the process of learning how to make a collage I learned about another way to have fun, relax, become engaged in something outside of myself, create something from nothing, and express who I am.

There were many times when I knew my speech problem was getting the best of me, but finding a creative means of expression has always helped. So, whether you choose to paint, rearrange your furniture, or come up with a new way to organize your recipes is unimportant. What is important is to have something, and finding that something for yourself is really what it’s all about.

Laying Blame for a Speech Problem

My speech problem began around the time I was twelve years old, in 1960. No one could say then what it was. It didn’t matter that I had grown up as part of a very close community of family and friends. Suddenly, with a voice that was strange sounding and no longer fluent, I knew that I no longer fit in.

When it was obvious that my speech problem wasn’t going away, my mother and I started arguing about it. No one knew what was wrong with my speech, but I never suspected I had anything to do with it. Yet, my mother wound up blaming me for the problem. Although I never fully believed her, I was vulnerable and began to question myself about it. Each time I couldn’t speak, which was almost always, I would think, “Why can’t I do this? Maybe Mommy’s right.”

I moved out of my parent’s house when I was eighteen. My mother protested but I was weary of seeing the look in her face everyday that told me my speech problem was my fault. She never used the word, but I felt like a failure in my mother’s eyes. On one hand it made me very sad, and on the other I knew that her attitude was killing me.

Although I was living on my own, I still spoke with my mother often and she always made me feel like there was something wrong with me. I wanted to get away from her blaming me but instead I turned it on myself. I knew I had to stop seeing myself as a failure and rebuild my confidence, but I didn’t know how. My self-image was so damaged that I began doing drugs and hanging out with the wrong people. I lived like that for two years until I decided, almost on a whim, to move two thousands miles away to California.

It was August 1968 when I moved to Berkeley. Even though it was an opportunity to make a fresh start, I didn’t. I continued to experiment with drugs and developed relationships with others who did the same. This went on for a few years until one evening when I witnessed a horrific drug experience. Someone paid dearly for shooting heroin and what I saw terrified me.

It registered almost instantly that, whatever the reason was for my speech problem, I didn’t want to keep punishing myself for it. I now fully understood that what I saw happen to another drug user could easily happen to me. Almost overnight I stopped doing drugs, dropped all the friends and acquaintances associated to that world, moved to a new place, and decided to finish college. It might have been the first time in my life that I realized how much I cared about myself. Perhaps I had hit bottom and this was the catalyst to finally give myself the nurturing I needed.

A year later I was working and attending college full time. Although I was moving forward and improving myself, I still felt a sense of frustration and failure around my speech. This especially happened each time I spoke with my mother on the phone. Finally, in my thirties and shortly before her death, I noticed that I didn’t even question myself if I felt my mother judging me harshly or blaming me for the unusual way that I struggled to speak. It had taken years but I finally realized that I didn’t have to play the blame game anymore. The endless cycle of her laying blame on me and then laying it on myself was over.

Interestingly, I felt vindicated when I was finally diagnosed and told that I have a severe speech disability. I was fifty-one years old but getting a diagnosis was such an emotional experience that it brought up the blame I had felt so much in the past. There was still a little of it stuck to my soul.

My doctors were very hopeful that treatments and therapy would help me to speak normally again, but the scars left from being blamed for something I never did or created were still there. A part of me still felt unworthy of ever being whole.

In time I was able to speak almost normally and, more than ten years since my diagnosis, I still can. Most of the feelings I accumulated from being blamed for my speech problem have subsided. But, once in a while, if I’m very anxious or scared, that old feeling of unworthiness may surface for a short time. I now put it to bed quickly. I know that it doesn’t belong in my head, and the words of blame laid on me for my speech problem should never have been said. 

The Two Sides of Enabling

When I was a little girl my mother helped me in different ways. Two really stand out. She taught me to read and she gave me a musical education. Of course, being literate opened the doors to everything. Because I can read I can write and it has enabled me to become educated. My studies in music also opened doors that have given me tremendous pleasure and the ability, at times, to earn a living. In these instances my mother’s actions helped me to develop and grow. They empowered me and enriched my life.

What my mother did for me fits the definition of the word enable as listed on www.merriam-webster.com. Here it means to provide someone with the skills or opportunity to do something. Enabling in this sense makes things easy and possible. However, in the psychological sense, there is a negative side to the word. (See http://en.wikipedia.org/wiki/Enabling)

After I lost my ability to speak normally around the age of twelve, I became familiar with the negative side of enabling. This is probably the one that most of us think of when we hear about someone who makes it easy for a drug addict to get more pills, or for an alcoholic to procure liquor. For those unable to speak, the negative enabler is anyone who decides to do any and everything for us because of our limitation. Although they may have the best of intentions, their enabling is destructive and doesn’t help at all.

From the time I lost my normal speech all I wanted was to be able to convey what I was thinking. For most of my life I didn’t have email or a means to help me communicate, but I could have written if I had thought of it or if someone had encouraged me to write what I wanted to say. That action would have shown confidence in me as a thinker and I would have felt respected. It would have given me a sense of control and made me feel better.

Instead, different people often took it upon themselves to finish what I was struggling to say or they would speak for me. In the beginning I felt so helpless that I appreciated this, but in time their action only made me feel worse about my predicament and myself. It made me focus more on my disability and I became ridden with anxiety and fear about my inability to talk for myself. Frequently an enabler took over the conversation and I retired to the background. I stayed there for years, feeling alienated and dependent while craving the skills that would help me to be understood. Their covering up robbed me of facing myself and developing skills to cope with my condition. I wanted to be heard so much, but not through someone else’s voice. I needed to find my own.

I believe that negative enablers are unable to face the truth. I saw it happen to my mother after I lost my normal speech. For reasons I never learned and will never understand, she couldn’t admit that I had a speech problem. Even though she saw me struggle to speak and heard my abnormal voice, she denied that anything was wrong. My mother turned a blind eye and dealt with my abnormality by blaming me. Other parents spoil their children, but the results are the same. Everyone suffers.

Similarly, I have seen a lot of harmful enabling with the Deaf. It happens when a Deaf child doesn’t learn sign language, the one thing that can give them their own voice. If a negative enabler starts speaking for the child and doing everything else for them, the child is robbed of the immense importance of learning a language and of becoming independent. These enablers don’t understand that someone who has a communication handicap is more than capable of learning and leading a full life. Even when my speech was at its worse, I wasn’t limited in other ways. Making that assumption about anyone with a disability is unfair.

According to www.livestrong.com many negative enablers are insecure. They often have feelings of guilt for whatever is wrong so they overly protect themselves and/or whomever they are trying to help. I have seen them make excuses for an imperfection or impairment, and act as if it’s not there when it’s obvious to everyone else.

Of course, there are levels of enabling. In my case I became so offended by negative enabling that I separated myself from it. I was fortunate to recognize what was happening to me and to have the know-how to find my own way. However, in extreme cases a child may not learn well in school or not fit in socially because the enabler has taken over making everyday decisions and dealing with responsibilities that belong to the child. Sometimes normal progress is not only impeded and delayed. It stops.

Whether or not you are disabled, we all need the proper respect and guidance to lead a full and happy life. If we look honestly at a situation and its potential, we can help others naturally develop as human beings. But, if we enable by trying to walk or talk for someone else, we will do more harm than good. I hope we can all learn to positively help each other by focusing on our strengths and allowing each of us to follow on our own unique path.

Is Anyone Listening?

I believe there is an art to listening and I’m still working at it. When I was little I didn’t understand how to do it. My world then was mostly about talking. I was surrounded by lots of people who talked about everything, all the time. My parents, sister and I were like that. We had strong personalities and emotions, and we expressed most of it on a verbal level.

Our kitchen table was the place where things like politics, people, and current events were discussed at varying decibels. My parents stressed that it was important to participate in conversations and speak one’s mind. Sometimes, in the midst of our talks, everyone was speaking at once so I raised my voice just to be heard. No one paid much attention to my outbursts. I began to feel that the most important thing was the flow of the conversation, not always what someone tried or wanted to say. I often wondered, “Is anyone listening?”

Just before I started high school I lost my ability to speak normally. Suddenly and without explanation I was left with a shaky voice, speech that was mostly indecipherable, and a lump in the bottom of my throat that never went away. In a short period of time it became painful to speak.

I was only about twelve years old when I lost my fluency. Being vocal had been such a big part of my identity, but within the year I would barely add anything to the ongoing talk around me. To speak I either had to painfully force out words or substitute words because so many were too hard to say. For instance, I couldn’t say a hard “G” as in “going,” so I used the word “come” instead of “go.” In the end I often couldn’t really say what I wanted and I didn’t think that anyone was particularly interested in listening, so I didn’t even want to bother.

School was no different. I couldn’t speak well enough to give the answers to questions, so I stopped raising my hand in class. I was in a hole that I couldn’t get out of so I took my place in the background. I stopped talking and I became a listener.

By the age of twenty I was comfortable sitting back and hearing what others had to say. As the years passed I observed a lot from all the listening I had done. I saw that some people don’t always have much to say, but they’ll talk because they feel a pressure to do so. Other people talk too much and speak over everyone, often controlling the conversation. Then there are those who I love to listen to. These people are great listeners themselves because I see them thinking when others talk. They are calm, patient, and don’t interrupt or rush to say what’s on their mind. Sometimes these people come across as quiet, but when they speak, people listen.

With all the listening I did I often told myself, “If I am ever able to talk again, I’ll never take my ability to speak for granted. I won’t take over a conversation. I’ll take my time and be thoughtful of others. I’ll try to be discriminate with my words and say things that matter.”

Almost forty years after my speech problem had begun, I was diagnosed with a severe speech disability and started getting help to speak again. When I was finally able to participate in conversations, I was very timid about it. Sometimes my voice sounded odd or weak, and if I had very little volume I could only speak quietly or in a whisper.

Slowly, over time, my voice often sounded more normal. However, when I began to use it in conversations I couldn’t help but notice that I did some of the things I disliked the most. I could be quick to respond and I didn’t always think before I said something. Sometimes I even dominated a conversation and I hated myself for that. When I caught myself doing these things, I would ask, “Haven’t I learned anything? What am I doing?” Then one day I made a conscious effort to slow down, be mindful, and remember the people who impressed me the most with their calm and patience. I knew if I could be like that, listen to others as much as I wanted them to listen to me, then my ability to speak would be worth something.

I am getting better at conversing and I believe it’s mostly due to all the listening I did. I know that I don’t need to raise my voice or force my words on anyone in a conversation, and I can speak quietly or with a voice that is broken and people will still listen. Even if my voice is gone and I can only use email to communicate, the idea is the same. All I have to do is listen to what others are saying with the same respect that I expect from them, be myself, and speak from the heart. It’s only then that I know people will pay attention. Only then will I get my say, and I won’t have to ask if anyone is listening. 

Overcoming Shame

When we have temporary feelings of self-doubt or inadequacy, we may experience shame. This type of shame is normal and some psychologists refer to it as genuine shame because it comes from within. However, when we are humiliated or embarrassed in public by someone else repeatedly, it is not considered normal. This is called false shame. (See: http://en.wikipedia.org/wiki/Shame)

Many people who are bullied suffer from false shame. Sadly, it’s also the case with many people who have noticeable disabilities. When I lost my ability to speak normally, I became familiar with it too.

I was already a somewhat shy twelve-year-old in 1960 when my normal speech suddenly became non-fluent. Once this happened and it was no longer easy to speak, I became even more timid. My initial fear was that my peers would tease me or dote on my strange sounding voice, but none of them ever did. It was some of the adults in my life, however, who would prove to be unkind.

My mother could never accept the fact that I had a speech problem. It was important to her that our family appear like we were “keeping up with the Joneses.” Mommy didn’t just want my sister and I to look like we were normal; she strove for perfection. Even before my speech problem began, I was saying the words “I’m sorry” all the time to my mother. Then, when the quality of my speech became shaky and staccato-like, it was impossible for me to even come close to fulfilling her unrealistic expectations.

Once in a while Mommy tried to pump me up and say, “You don’t have a problem. You can achieve whatever you set your mind to.” But most of the time, I saw and heard the opposite.

During my teenage years I became very familiar with a look of doubt on my mother’s face that chipped away at my self-esteem. When I tried to speak and couldn’t, she gave me that look accompanied by, “Iris, speak clearly! I can’t understand you!” I was trying so hard to please my mother, but if my life depended on it, I couldn’t even say my own name. To say something as simple as, “My name is Iris,” was out of reach. Often, when I tried to introduce myself, people thought my name was Miris because I couldn’t separate many sounds, like “m” and “I.” Eventually, they understood my name but they also understood that I had a hard time talking. As an adolescent I couldn’t understand why my own mother didn’t accept and understand this too.

In time it was obvious that my speech was worse around anyone who was impatient and lacked compassion with my inability to communicate normally. If someone asked, “What’s with your speech?” I could sometimes manage to respond with, “Ah-I d-on’t kn-o-ow.” However, numerous people would respond with something like, “Gee, it sounds like it’s really hard for you to speak,” and still keep asking me questions about it. Like Mom, they could see that I was struggling just to utter a single sound, but they persisted in pushing me to talk. I never felt that they wanted to help me. All I came away with were attitudes and looks that made me feel like there was something wrong with me. I felt defeated and frustrated after trying to speak with them, ashamed of my voice and of myself.

My mid-teens were the most painful years in my life because I felt so much shame about myself so often. My mother made me answer all of our phone calls and forced me to speak at dinner every night. I often felt as if she was trying to prove that she was right and I was wrong. All I could ever do is prove time and again that I couldn’t do what she asked of me. Our evenings often ended with Mom yelling and me crying. Daddy usually sat by and didn’t say much, but I remember him intervening when things got heated. He would quietly tell Mom, “You need to stop. That’s enough.”

Many people isolate themselves when they are bullied or intimidated repeatedly, and that’s what I began to do. I locked myself in my room at night and refused to talk to my parents. At social events I stayed in the background too. As the years passed, my undiagnosed speech problem remained just that and, although I began to wonder if there was actually something wrong with me, those thoughts were fleeting. Instead, my instinct to survive took over, and my anger did too.

My mother’s lack of support broke my heart, but it also brought out an intense anger in me. Sometimes anger can be a good thing. In this case it was because it acted as a catalyst that spurred me to leave home as soon as possible. I must have been around fifteen when I made that decision. The thought alone gave me a sense of control and empowerment. It made me realize that I wasn’t as weak as I felt or thought I might be.

 

I left home when I was eighteen. It was hard for me to support myself at the time, but that wasn’t the worst of it. I was an emotional wreck. It would have been nice to leave all of my accumulated anger and shame at home with my mother. Like my other belongings, though, I took my emotional baggage with me.

Living alone gave me the peace and quiet to honestly face my feelings. Looking inward, I began to have breakthroughs. I saw that I was a survivor. At home I had often worried about losing my spirit, but on my own I could see that it was alive and strong. Others may have doubted me or had a need to challenge the difference they saw in me, but I knew that I never created or perpetuated my unusual speech; I could feel that it resulted from something involuntary. I knew I was okay. In regard to my speech, I had nothing to be ashamed of.

When I was twenty I moved from Chicago to California. Even though there were two thousand miles between us, the relationship with my mother remained difficult. I could hear her judging me over the phone, with her audible sighs and little biting remarks like, “I can’t understand you. Can you please stop saying um so much?” My speech problem was still a mystery, but I was learning how to cope with anyone who made me feel bad about it. If anyone did this, I turned the tables and began to question them. I didn’t have the ability to verbally respond, but the words in my head were often, “What is wrong with this person?” I was learning about self-preservation and how to parent myself.

My mother died in 1987. I wasn’t at peace after her passing because I still harbored anger, great pain and sadness over the way she treated me because of my speech. Then, in 1989 I read Toxic Parents, a New York Times bestseller by Dr. Susan Forward. This book looks at many different case studies where children are abused by the ones they trust the most. Toxic Parents has numerous cases that I could easily relate to and it confirmed what I had suspected for many years -- that I had been verbally abused.

In her chapter called The Verbal Abusers, Dr. Forward discusses “The Power of Cruel Words” and also talks about parents who are competitive or perfectionists, and the kind of lifelong damage they can do to their child. Even if all the adults who made me feel bad didn’t mean to, their abuse was real. The book delves deeply into this, but I came away from reading it with the understanding that one of the things my abusers all shared was a sense of inadequacy. In the end, the shame I felt so deeply and for so many years wasn’t even mine; it was theirs all along. Realizing this, I could simply let it go.

If you have ever suffered from a false sense of shame, I hope you will examine it and remember my experience. Once I understood the source of my shame, it went away. By believing in myself and focusing on my strengths, I was able to rebuild my spirit. It had been broken many times, but never lost. That would have been a terrible shame.

The Law, Services, and Aids for the Speech Disabled

If someone loses their voice or it suddenly stops working, their life dramatically changes. Depending on what they do for a living, they might lose their job. Certainly, they will no longer be able to communicate as they once did.

My voice suddenly lost its fluency when I was a pre-teen around 1960. When I was finally diagnosed in 1999 and began getting treatments to help me learn how to speak fluently again, I clearly remember meeting with my speech therapist. We had a serious talk and I’ll never forget that he said, “Iris, make sure you have a job where you don’t need to rely on your voice.”

Due to my speech problem I struggled with this all of my life. Using the telephone was extremely difficult, so when computers and email became popular, I was very grateful. Not only did email help me to communicate more in my personal life, but it became my main means of contact at work too. In the 1980s I got a decent job in the publishing industry where I stayed for almost twenty years. During that time I felt very fortunate to be paid to use my brain, do some interesting editing work and, most importantly, rely on email and not use my voice that much.

In 2008, after learning American Sign Language (ASL), I was thrilled to begin a new job where I work with Deaf and hard-of-hearing children. I use ASL to help give preschoolers a language and a means of communication. Recently I have had the good fortune to also use ASL with children who are speech delayed or, like myself, have a hard time using their voice.

For the more than fifty years that I have lived with a speech problem, the hardest things for me were finding good work and being able to fully communicate. Since my diagnosis I have learned about things that could have helped me in the past. These include the law that protects the speech disabled, services available for them, and speech aids to make their work and personal lives easier. Some of these things weren’t around until recently, but they are today. For anyone who is speech disabled, I hope the following information will help to improve their lives, both work and private.


THE LAW
ADA, The Americans with Disabilities Act (See: http://www.ada.gov/cguide.htm#anchor63109)
As recently as 2009, the ADA has been amended to ensure that all American citizens who are speech disabled have access to telephone usage. Here is an excerpt from Title IV.

“Title IV … requires common carriers (telephone companies) to establish interstate and intrastate telecommunications relay services (TRS) 24 hours a day, 7 days a week. TRS enables callers with hearing and speech disabilities who use TTYs (also known as TDDs), and callers who use voice telephones to communicate with each other through a third party communications assistant. The Federal Communications Commission (FCC) has set minimum standards for TRS services. For more information about TRS, contact the FCC.”

Additionally, The Telecommunications Act states:
“Section 255 and Section 251(a)(2) of the Communications Act of 1934, as amended by the Telecommunications Act of 1996, require manufacturers of telecommunications equipment and providers of telecommunications services to ensure that such equipment and services are accessible to and usable by persons with disabilities, if readily achievable. These amendments ensure that people with disabilities will have access to a broad range of products and services such as telephones, cell phones, pagers, call-waiting, and operator services, that were often inaccessible to many users with disabilities. For more information, contact:

Federal Communications Commission, 445 12th Street, S.W. Washington, D.C. 20554 (www.fcc.gov/cgb/dro)

(888) 225-5322 (Voice) (888) 835-5322 (TTY)”


SERVICES
Disability.gov at https://www.disability.gov/employment is a federal government website. The information is nationwide, linked to more than 14,000 programs and services from federal, state and local government agencies, schools, and nonprofit organizations. It is my favorite discovery because it can help the speech-disabled where we often need it the most: finding work. However, it is a great resource for housing and social security disability benefits too. This is an incredible site for anyone who is disabled.

The California Telephone Access Program (CTAP) and The Deaf and Disabled Telecommunications Program (DDTP) are both part of the California Public Utilities Commission. They are examples of state programs that offer specialized telephone equipment and network services at no cost to qualified state residents who have difficulty using a standard telephone. See: http://ddtp.cpuc.ca.gov/default.aspx and
http://ddtp.cpuc.ca.gov/Equipment_by_Certification.aspx##Speech%20Disabled)


SPEECH AIDS
If you are interested in getting a device, I strongly suggest that you first consult with your speech doctor and/or therapist. As specialists, they are often familiar with these products. They may be able to help you get the speech aid you want or a similar one for little or no cost. More importantly, they will help you greatly because they understand which device will best serve you.

The links at http://ddtp.cpuc.ca.gov/ will lead you to a list of many speech aids. Some are used to amplify one’s speech, take messages, or provide a response to messages without using one’s voice. Below are descriptions of some of the devices they offer.

TTY/TDDs
TTY is short for telephone typewriter or text phone, and the TDD is a telecommunications device for the Deaf. Both devices are usually categorized under TTY/TDD. Each device uses a phone line to communicate with another TTY/TDD or a regular telephone. The majority of TTY/TDDs are the size of a laptop computer and include a keyboard, display screen, and accompanying printer.

In some cases the TTY/TDD connects to a live relay operator who will relay the message. This is often referred to as Voice Carry Over, and it is available in many countries around the world. However, newer models skip the relay operator and the message is sent from a personal computer equipped with a special modem and software. Additionally, if one doesn’t want or have a regular landline, they now have the option of using a portable TTY/TDD.

Amplified Phones
With my doctor’s assistance, I received a free telephone from CTAP that amplifies my voice. It is a 2001 model that picked up nearby sounds. The newer models, however, are greatly improved. They can block out static, interferences and/or other nearby noises.

My amplified phone connects to my landline, is clunky, amplifies my voice, but has no other features for someone who is speech disabled. Today one can get a portable amplified phone with caller ID and emergency connection features, as well as a keyboard. Hopefully, you can get the device you need through your doctor for free. However, if you buy one, most of these phones currently range from approximately $100 to $150.

Electronic Larynx
These are amazing aids that are often operated manually. The typical artificial larynx can be set to control voice pitch and volume, and some can even add intonation to create the sound of more natural speech.

Telephone Fluency System (See: http://www.assistech.com/products/Speech-Devices.htm)
This item costs $1500, but Assistech claims that “When used with traditional stuttering therapy, this device can almost eliminate stuttering.” It plugs directly into a telephone.

Remember: The laws and services are the result of many struggles for basic civil rights. Along with the speech aids, they are in place to help those who are speechless participate as much as possible, make their lives easier, and make sure that their voices are heard.

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.