Speech Problems and Social Anxiety

After my speech disorder began, it was so hard and painful for me to speak that I emotionally wanted to shut down. With no diagnosis for my unintelligible speech, I became afraid of social situations with people I didn’t know and, if I had to speak, I became even more anxious. I felt my heart race as my palms got cold and clammy. I wanted to run off and hide so I could avoid feeling humiliated because I couldn’t speak. Undiagnosed for almost forty years, I experienced these typical feelings of social anxiety hundreds of times. However, once I was diagnosed and knew that I had a severe speech disorder due to a physical problem with my voice, I began to feel better about myself and suffered less from social anxiety symptoms. Once in a while they creep into my life. For the most part, though, they are gone.

In my case social anxiety symptoms were a result of my speech problem, not the cause. With social anxiety the most common fears are interaction with strangers, any kind of public speaking, or that we will be publicly judged, rejected, humiliated or embarrassed. It lends itself to vocal problems that may show up in the form of a shaky or nervous-sounding voice, a voice that cracks, rapid speech, a dry throat, a stammer, stutter, or muteness. It is not unusual for any of us to occasionally experience any of these symptoms, but if they become a pattern, we need to seek help from a doctor or therapist. In order to begin treating it, though, it is essential to understand if the symptoms are due to something wrong with the voice, or if something is wrong with the voice due to a social anxiety.

The work place is where I have seen people suffer the most from social anxiety. Two people I have worked with come to mind. One lovely young woman is a teacher. She is excellent at her job where she works with special needs children. Although some might view her job as stressful, she seems very relaxed in the classroom. She appears to be comfortable in most situations outside of the classroom too. However, if she is asked to speak to a group of adults or is placed in a position of authority amongst adults it is almost impossible to hear her. Her voice becomes so quiet that it sounds like it is almost gone.

Another very artistic young person I know is a joy to be around. I always feel very relaxed when I am with her and I usually find myself complimenting her on whatever she is wearing because of her creative flair. On the surface she looks like someone who has a lot of confidence. However, if she is asked to say anything in a large public venue or to a group, her throat gets so dry that she can’t speak at all.

Sadly, children also suffer from social anxiety. One I know is a darling and very bright four-year old boy. When he is at home with his family he is constantly talking. In this environment he is active and normal for his age in every way. However, at school and out in the world when he is with strangers, he becomes mute. His parents had worried that something was wrong with their son’s speech but this little boy can speak very well when he is emotionally at ease. He suffers from a form of social anxiety called Selective Mutism. It occurs when someone who is capable of speaking is unable to do so, but only in certain situations and/or with certain people. Adults and children both suffer from this, but one of the big concerns about Selective Mutism with children is that it can and often does impede their academic growth.

Like stress, social anxiety is brought on when we think we are in danger. However, stress is a response to a particular thing or situation and goes away when the stressor is gone. Anxiety doesn’t. Social anxiety might be based on a bad experience or come from our imagination. In either case, the stressor can be long gone but someone with this condition will still be suffering from it. When I thought I might have social anxiety I had to learn how to handle it. Here are some of the things that helped.

Exercise definitely helps to ward off anxiety. Even though my symptoms of social anxiety were due to a speech disability, exercise helped me to calm down and make my ability to speak a little easier. Since social anxiety plays with the head as much as the body, find an exercise that gets you going like jogging, cycling, hiking, walking, or even gardening. It will greatly help you to naturally relax, sleep better, and distract you from whatever causes your problem.

Relaxation techniques like a yoga class can be greatly beneficial. Just like a meditation, anything that attempts to slow you down and helps you to breathe more easily will calm you and relieve anxieties.

Too much caffeine, sugar and alcohol can increase anxiety. This is also true for any kind of drug and/or supplement, including herbs and vitamins. Always check with your doctor if you are using any kind of substance regularly. You may want to cut these out entirely and overhaul your diet. This alone can make an enormous difference in your overall health.

Some severe social anxiety does require seeing a therapist and/or taking medication. Since the main problem concerns other people, the best type of therapy is in a group setting. However, if you work on improving the basics like diet, sleep and exercise, you may be able to manage and eventually remove this condition from your life in your own way and time.

One of my favorite things is what I call decompression. I rarely have bright lights or loud music on because I find them to be over-stimulating and stressful. Similarly, if you’re feeling anxious, don’t watch a scary movie, action film, or listen to any kind of angry music. Instead, find something that soothes you. Watch a film that is light and funny, or occupy yourself with a creative outlet that you enjoy, like painting or writing. Creating a journal about your anxiety might help you to come to grips with it better too. 

Although social anxiety can create speech problems, we can learn to control and even get rid of it. I actually think of social and other anxieties as bad habits, like anything we unconsciously adopt. But bad habits should be broken. I believe the best way to start is by accepting it. We need to recognize that social anxiety wears down a person’s confidence so our job is to build ourselves back up. This means being kind to ourselves and to others who may be suffering from this condition, and not being hard on ourselves if a social situation or someone throws us off. It’s important to move on and focus on our good points. Then, hopefully, as easily as the social anxiety came into our lives, we’ll notice one day that it has suddenly rolled off our back and is simply gone. 

The Disabled and Courageous Living

Years ago, during a conversation about my speech problem, a friend of mine said something that I will never forget. She told me, “I think you’re one of the most courageous people I know.” I was completely flabbergasted. I responded, “I’ve never viewed myself that way. I just did what I had to do to make my life work.” Then she added, “But Iris, I find it remarkable that you never let your speech problem stop you from following your dreams. You never gave up.”

I have thought about my friend’s words many times. And, since I’ve been speech disabled for most of my life, some related questions have repeatedly come up.

I’ve asked if I just happen to be someone who was born with a “never give up” spirit or did I develop it because of my speech problem? My answer is yes to both parts of this question. I was born with a relentless spirit that said, “If you tell me I can’t do something, then I’ll prove that I can.” Unfortunately, this worked against me regarding my speech problem. As hard as I tried, I could never speak fluently because (as I learned late in life after my diagnosis) it is something of a physical nature that I can’t control. However, this same spirit fueled my pursuit of almost everything else, and having a speech problem fueled it even more.

I’ve also asked myself if a disability gets the best of some people and keeps them from pursuing their dreams. Again, my answer is yes. There certainly are people who don’t have my spirit, and any kind of hardship may negatively change their life. However, I think most people, disabled or not, are like me.

When I was struck with the inability to speak as a pre-teen, I felt very weak and lost. Whatever was to happen, though, I made a decision to live life and not be afraid of it. For the almost forty years that I was undiagnosed, this was very hard. Yet, over time I gained a little more strength and it just kept building. I have always tried to live by my decision to face life, whatever the circumstances. And, in this regard, I know I’m not alone.

Everyday each of us might have to choose whether or not to live according to what we believe is morally correct. We often have to make decisions based on our values and act upon them, no matter what. For instance, if things don’t go our way, can we still be loving, respectful and kind? I think this is what truly takes courage. It is true for a nurse, or a cancer patient, or a teacher, or anyone who gets up every morning to go to work in order to feed their family. It is true for me and everyone else. So, although I know that having a disability isn’t for sissies, neither is the act of living.

In the course of my lifetime I have known many people whose lives were filled with hardship, or changed by an accident or illness. It has happened to people from all walks of life at almost every age. Some people I know have had to battle an illness for a long time, or suddenly adapt to living in a wheelchair. However, like me, they never gave up. For instance, I have a young friend who is battling cancer but you would never know it. She always looks her best, greets everyone with a smile, and goes about what she has to do without any complaints. I find her awe-inspiring, but I know that she is one of many. Like her, each of us must determine whether or not to be courageous and do our best with what we have. She and others like her are my heroes. Without even knowing it, I probably pass by many “heroes” on the street everyday.

When I think of living courageously, I am reminded of a nautical concept called “the ninth wave.” At sea, waves grow larger in a series, up to the ninth or largest wave. Although winds can alter the strength and pattern of waves at any given moment, the ninth wave develops from the smallest little movement in the ocean to the biggest. Similarly, when we embrace the twists and turns that life throws us, we can grow stronger and become like the ninth wave. I don't think it takes much. All we need to do is stay open, keep moving forward on our path, and welcome every little wind that pushes us along the way.

Disabilities, Pity and Compassion

Two weeks after I was diagnosed with a severe speech disability in 1999 I received my first treatment for it. I was in a state of wonderment, marveling how lucky I was to have found the missing piece of the biggest puzzle in my life. Having a name for the strange condition I lived with for the past forty years was new for me, as was the miraculous prospect of being able to speak if I responded successfully to treatments.

My doctors explained that it could take years to learn how to speak correctly and sound somewhat normal, but I must respond to the treatments for this to happen. They also said that, if the treatment succeeded, I would have a very breathy voice. I went to my first treatment knowing all of this, hoping that I would sound breathy, but also better.

Ever since my voice problem began as a young girl, I hated the sound of my voice. It was broken and I couldn’t speak at a single pitch. When I tried to talk it uncontrollably went up and down in register, accompanied by a staccato-like quality that was rough and cracked.

I often got very frustrated with my speech problem, but was rarely depressed about it. Yet, even after learning the truth about my condition and responding successfully to my first treatment, I became depressed. I hated the sound of my voice even more. The treatment produced a whispery, almost frog-like timbre. My doctors said it would smooth out, gain volume and sound more normal over time, but – as a woman — I thought it sounded masculine and harsh.

Even though I had the hope of speaking normally one day, I couldn’t get past the external effect of my treatment. I wallowed in self-pity and this went on for weeks. Then one evening, sitting in the dark with the TV on, a program came on about Siamese twins. It was about two sisters and all of the everyday challenges they faced. I found myself in awe of how they went about their lives, doing what they had to do, even though these women had to deal with such an extreme hardship. A part of me was totally inspired, but another part of me felt ashamed of myself for thinking, “It looks like they have it harder than me.” I was shocked when I realized this about myself, but it woke me up. Once I saw how my thought process was going, I vowed that I would never again give into that feeling of pity for myself or anyone else.

Over time, I became involved with many disabled people. Through school, work and personal situations, I made friends and acquaintances who were Deaf, or bound to wheelchairs, or who had lost their voice due to the same condition as mine. At times I found myself about to pity someone but then I would catch myself, focus on that person’s strengths and capabilities, and turn what could have been pity into compassion. That shift helped me to see everyone, including myself, in a completely different light.

As the years passed I was very lucky to get ongoing treatments that enabled me to speak almost normally most of the time. I no longer hated the sound of my voice but actually began praying for the return of that frog-like voice after a procedure.

Still, I experienced lots of people asking me about my voice after treatments. Some people were very caring and it was easy to discuss my situation with them, but others were not. In fact, one day shortly after a successful treatment, a colleague was shocked by the sound of my voice when I said “Good morning.” She asked if I was sick. When I explained what my croaking sound was due to, she responded, “Oh no, that’s awful!” And the look of horror on her face didn’t make me feel much better. Her reaction made me feel defensive, as if something was wrong with me. I felt like I had to explain myself so I assured her that sounding the way I did was a good thing, but she didn’t seem to get it. Her lack of understanding made me feel pitied and it put me off, making me feel distant from her. This is what pity does.

So many experiences like this have made me think about the difference between pity and compassion, and how, in particular, it affects relationships between those who are able-bodied and those who are not. If you’re not used to being around disabled people, perhaps you have a notion that they are sick or helpless. These kinds of ideas play on people’s sympathy but often give the wrong message – that anyone who is disabled is unable to function or contribute to society. I believe that pity comes from a place where people, even those who are well meaning, are uncomfortable or scared by what they see so they can’t empathize with the other person. Compassion, on the other hand, seems to be the exact opposite.

A shining case-in-point is Helen Keller. If we look at her story we can see how pity and compassion play out. As a blind and deaf mute, Helen Keller’s family pitied her and practically gave up on her. I think Helen’s family lost sight of the spark in her, but her teacher, Anne Sullivan, saw it. While her family allowed Helen to become something of a wild child, Anne Sullivan struggled compassionately with Helen so that she would learn language and develop as a human being. This enabled Helen to become an accomplished author, political activist and lecturer. Helen Keller even co-founded the ACLU, American Civil Liberties Union, which serves as an advocate for human rights.

Many people don’t seem to know how to be compassionate with others who have challenges they know nothing about. But I believe we can all learn. Perhaps learning how to be compassionate is learning how to support others. Surely, one can selflessly share in another’s struggle, but I think the act of compassion can be simple too. It can be a caring touch, or a warm hug that makes someone feel better. Over the past few years I’ve tried to be more compassionate by simply smiling more when I see people. It might be for the briefest moment, but sometimes a warm smile or the smallest act of compassion will give someone what they need. Who knows? It might even make their day. 

Quality of Life and the Disabled

When I was growing up I heard people talk about quality of life (QOL) versus quantity. As a little girl this didn’t make much sense to me, but in time I learned that most of us want our lives to be long, happy and healthy. I never really thought about this much until I lost my ability to speak normally around the age of twelve. Almost immediately, creating a good QOL for myself was all I could think about. Quantity didn’t even matter.

Growing up, my parents were always trying to make ends meet. Their exhaustion and struggles around finances seemed to produce a constant flow of emotional volatility and dysfunction in our family. I often felt like I was walking on eggshells around my parents, so my QOL wasn’t great to begin with. Then, when I could barely communicate and had no diagnosis for my problem, things got worse. When this happened in the 1960s I was so lost and had such little support that my overwhelming concern was how to make each waking moment okay. I had lots of thoughts like, “How can I avoid struggling to speak with someone?” Or, “I hope I won’t fail but I don’t know how I’m going to get through the report I’m supposed to do at school today.”

My young life became so filled with moment-to-moment challenges that I never sat down and thought, “What does quality of life” mean to me? However, my QOL and the lack of a good one made it more obvious every day that all I wanted was a peaceful home life, to not feel anxious, and to have some kind of inner peace.

Once I was out of my parents’ house and living on my own, my biggest concern became money. I didn’t want to merely survive and eke out a living; I wanted to enjoy life. Still, since my speech was so problematic and I was living in an age where everyone used their voice and the telephone to communicate, my job possibilities were limited. I began to equate a good QOL with one’s standard of living so I thought if I could find a decent job where I used my mind but didn’t have to use my voice, maybe I’d have a chance to lead something of “the good life.” But it was hard. I settled for many jobs that I disliked, where I gained little reward financially or otherwise. I budgeted like crazy and watched every cent I made. I was fired from one job due to my speech and the condition of my voice made me feel very insecure at other jobs. There was little stability in my earning power, but I never gave up. I knew I had to keep going.

Of course, I envied people whose lives seemed easier, and I would periodically break down from the frustration of my situation. To compensate, I overindulged in lots of bad behavior and reckless affairs. I hoped all the drugs and rock ‘n’ roll would help me forget my struggles and up my QOL, but nothing changed.

This went on into my thirties, but then things began to shift. I lost some very significant people – friends and family, including my mother. I also put down two of my most beloved pets. After each passing I asked myself the same question. What was the quality of their life? Were they happy? With every answer I asked the same of myself. My life still felt so challenging, but deep down I also felt that I might be what was blocking my way to something better.  

Although I was terrified of honestly facing the blatant truths about my life, I knew I had to. I had to admit that I might never get a diagnosis for my speech condition, that I may never speak well again, and I may never have a good job. Once I faced these hard realities, I felt relieved. I wasn’t even depressed because I suddenly realized that, although my disability placed all kinds of limitations on me, it also forced me to find out who I was on the inside. It pushed me to discover that I was strong and courageous, so I could improve my life condition in spite of whatever obstacles I might have.

It was fascinating to see that once I faced my disability honestly and accepted everything that came with it, there was no longer a need to fight it in any way. I began to feel much healthier on the inside because I finally recognized the best parts of myself, and this gave me a tremendous sense of power and pride. Interestingly, this switch in my perspective seemed to almost effortlessly produce a much more pleasant life on the outside too. Eventually I was diagnosed, given treatments that enable me to speak, and learned sign language to have a job that is fulfilling.

I believe that most people, whether they are disabled or not, think much more about their QOL when they are personally faced with an adversity. I will always wonder if my disability helped me deal with life’s challenges more easily than others, merely because it was forced on me. Perhaps if I didn’t feel so pressed to face my challenges and work creatively around them, I would be a totally different person. I don’t know.

What I do know is that being disabled has played a key role in creating “the good life” I now live. Although money has little part in this, I consider myself to be enormously wealthy. It is a wealth that gives me a happy and peaceful feeling on the inside, and that seems to naturally result in the same on the outside too. Again, I don’t know if I gained this wealth because my disability demanded me to dig deeper to recognize my strengths, but I suspect that many people with disabilities may have acquired such wealth too. However, this wealth certainly isn’t just for the disabled. It is a treasure inside each of us just waiting to be found. All it takes is a little courage and some persistent digging around. 

Sign Language Isn’t Only for the Deaf, Part V: Learning Sign Language

Note: As previously mentioned in my blogs from September 2011 and February 2013, 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)

People suddenly stricken with a voice affliction may not want to immediately learn sign language. They may be overwhelmed by the dysfunction or loss of their voice, and the idea of learning a new language may be the last thing on their mind. Like learning any foreign language, it requires time and practice. But, learning sign language is fun and great medicine too. After struggling for decades to be understood with an undiagnosed voice disorder, I was thrilled to be able to learn a means of communication that didn’t rely on my voice.

Some people learn home or made up signs (see http://en.wikipedia.org/wiki/Home_sign) and study sign systems like SEE signs (Signing Exact English). These are not part of an official language that will enable you to communicate with others. So, if you’re going to make the effort, you should study the recognized sign language for your native tongue. ASL (American Sign Language) is used in the U.S. Variations of it are also used worldwide as well as in Austria, Canada, Germany, Finland, Malaysia and Norway. Since I am an American whose native tongue is English, I’ll focus on ASL. Here are my suggestions on how to get started.

The first thing you need is a good ASL dictionary. I began my studies with “The American Sign Language Handshape Dictionary” published by Gallaudet University Press. It is organized by the hand shapes that form signs, and not by English words in alphabetical order. I bought it at a used bookstore and it’s been an invaluable part of my learning experience. Of course, there is a vast selection to choose from and something else may better suit you. So, browse your local bookstore’s language section or go online to see what you prefer.

Any good ASL dictionary will include a chart of the ASL alphabet. Learn this first. I used to practice the ASL alphabet when I was walking around town. Since I’m right-handed, I began with that hand and then I learned it with my left. Once you feel comfortable, practice spelling out your name so that you will be able to introduce yourself in ASL. The first sentence I learned was, “Hello, my name is Iris.” In ASL, this is “Hello, my name Iris.” The word “is” is not used.

While you are doing this, you may be interested in looking at http://www.babysignlanguage.com/chart/. This site shows elementary signs and how to practice them. You can print out their chart and put it on the refrigerator or a spot where it will be frequently seen by your family and friends. Or, you may want to purchase their flash cards and carry them around to help you and those around you learn.

Once you feel ready to move onto a more in-depth study, a wonderful site is at http://lifeprint.com/asl101/pages-signs/m/momdad.htm. It provides 100 basic signs, along with a video that demonstrates each one. This makes it easy because you don’t have to figure out which signs to learn. There’s no guesswork involved, just practice.

As your signing grows, you’ll want to visit other sites like ASL Pro at http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi to develop your skills and better understand how to correctly make the signs. This particular site has thousands of words and phrases. Like many of the other online tutorials, ASL Pro has a video demonstration for each of its signs.

In the past it was almost impossible for many hearing parents to learn sign language, but today there are many free tutorials online that make it convenient. For example, if you live in northern California, you can register at www.csdeagles.com/outreach/vp1.php. This is provided through the California School for the Deaf, featuring twelve weeks of 30-minute classes. If you’re new at this and don’t know anyone who is deaf, you may want to begin by contacting your local school for the deaf. It’s another great place to start.

My guess is that once you begin signing, you’ll get hooked. Starting with books and online classes is fine, but the point of learning any language is to share our thoughts and ideas with others. So, please try to get out and take a class or find a friend or partner who will sign with you on a regular basis.

I chose to learn ASL by attending a two-year program at a local community college. Except for my first instructor who was a CODA (child of deaf adults) and only used her voice during my first class, all of my teachers were Deaf and there was no speaking allowed. This not only taught me the language properly, but it immediately gave me a better insight into the world of the Deaf and their culture – something we learn in the study of any foreign tongue.

If you attend a sign language class, you will also become informed of Deaf events. I urge you to attend as many of these as possible. This is where you will discover a new world, get to share ASL with others, and hone your signing skills. Some people you meet at these events will be hearing, but most will be d/Deaf. Given this opportunity, you will quickly see that, whether your signing skills are good or not, you will be appreciated for your efforts and what comes from inside.

In concluding this series, I hope you will seriously consider learning sign language. The moment I began to learn ASL I felt empowered. Over time, as my skills improved, it opened doors for me that had been closed most of my life. It gave me meaningful work and a confidence in expressing myself that I felt robbed of due to my speech disability. Perhaps, though, the most important thing about learning ASL for me is that it confirmed what I believed to be true when I was barely twelve years old and lost my ability to speak. It taught me that sign language isn’t only for the deaf.

Sign Language Isn’t Only for the Deaf, Part IV: Why Learn How to Sign?

“Necessity is the mother of invention” is a saying that couldn’t be more aptly used than in the formation of sign language. In my past few blogs on this subject, I hope you have gained some understanding of the enormous amount of work and creativity that resulted in what we know today as official sign languages. But, given this and all of the technological wizardry that can help the voiceless be heard, you may still ask: Why should anyone who isn’t deaf learn how to sign?

Personally, as someone who is speech disabled, the most advanced technological device could never replace what comes directly from my heart and mind. I know that a machine can say, “I want to go to dinner,” “Good morning,” and all the other things that I may want to communicate. But, if I want to speak with someone about politics, religion, and philosophy or just offer my personal perspective on life, I want to have the ability to express myself in my own words and in my own way. Sign language provides this.

I am only one of thousands (or perhaps millions) around the globe who is speech impaired. My life is much fuller because I learned how to sign, so I strongly believe that people with ailments like stuttering and speech loss due to illness can also have the same experience.

For instance, those afflicted with Down syndrome have a tongue that is too long so it is difficult for them to speak. According to http://www.altonweb.com/cs/downsyndrome/index.htm?page=useofsigns.html, “Creating signs comes earlier for many children than saying the corresponding word, both for children with Down syndrome and normally developing youngsters. Perhaps the oral motor planning required for talking is more complex than instructions for the hands in signing.”

Additionally, although sign language is also visual, the blind are not totally excluded from using a very important element in signing, called fingerspelling. Looking at the story of Helen Keller, I am reminded that perhaps the most famous blind and deaf person first discovered language through fingerspelling, “the process of spelling out words by using signs that correspond to the letters of the word. There are lots of times when fingerspelling is used, most commonly for naming people, places, movies, books, and brands. Or maybe there is a sign, but it is just as fast or faster to fingerspell the word.” (See: http://www.lifeprint.com/asl101/fingerspelling/fingerspelling.htm)

Before Helen Keller understood language, she learned words. She learned her first word – her first meaningful message – through fingerspelling. Helen Keller wrote, “We walked down the path to the well-house, attracted by the fragrance of the honey-suckle with which it was covered. Someone was drawing water and my teacher placed my hand under the spout. As the cool stream gushed over one hand she spelled into the other the word water, first slowly, then rapidly. I stood still, my whole attention fixed upon the motions of her fingers. Suddenly I felt a misty consciousness as of something forgotten, a thrill of returning thought, and somehow the mystery of language was revealed to me.” (See: http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_keller.hcsp#P31_3846)

Of course, there are many people who don’t learn sign language out of necessity, but do it anyway. When I attended school to learn ASL (American Sign Language) there was one other person like me who was speech disabled. Besides my Deaf instructors, everyone else I met was hearing. Some had a close relative, friend or co-worker who was Deaf and it was important for them to be able to communicate fully with them. For most of the students, though, learning ASL was fun and, like the study of any foreign language, provided a new way of looking at the world. This was 2006 and I then discovered that many American high schools and colleges offered ASL to satisfy foreign language requirements.

This popularity of sign language is also evident among parents who use sign language to teach their babies and toddlers to communicate. “Since hand-eye coordination develops sooner than acquisition of verbal skills, infants can learn simple signs for common words such as eat, sleep, more, hug, play, cookie, and teddy bear before they are able to produce understandable speech.” (See: http://en.wikipedia.org/wiki/Baby_sign_language) As a result, many studies have proposed that children who began signing before they could speak have an advantage over those who didn’t, like better comprehension, the ability to verbalize their needs earlier, as well as less frustration at getting their basic needs met.

Sometimes I just enjoy the fact that I can use ASL to talk with someone across a crowded room or in a theater or other area where it should be quiet. I’ve also loved using ASL on numerous occasions when I’m in traffic, like at a four-way intersection where no one seems to know who should go first. I just naturally go to my hands and utilize signs that I know everyone will understand. It works like a charm.

If you don’t know how to sign but are interested, I hope you’ll join me for my next blog. I’ll give you some easy steps to help you start learning this incredible language that is not just for the deaf, but for everyone.

Sign Language Isn’t Only for the Deaf, Part III: The Fight To Be Heard

People all over the world have fought for their liberty and the right to speak freely. So have the Deaf. In their case, as well as for anyone without a voice, they have had to fight against a speech and hearing-oriented society that often has refused to see and hear them. Because I am speech disabled, I have experienced this firsthand. As soon as I lost my ability to speak normally around 1960 I started to learn about the ignorance of prejudice. Quickly I found out just how hard it is to be recognized and accepted for who I am, because I happen to be different. Like the Deaf, I have had to learn how to get people to focus on my strengths, not my limitation.

As I mentioned in my previous blog (dated February 24, 2013), sign language was kept alive in America due to the efforts of many. I noted one man in particular – the educator Thomas Hopkins Gallaudet who founded the first school for deaf children in 1817. Gallaudet’s son, Edward Miner Gallaudet, became superintendent and then president of the Columbia Institution for the Instruction of the Deaf and Dumb and Blind. Located in Washington D.C., the school began with eight students and conferred its first degrees in 1864, signed by President Lincoln. Five years later, three graduates received diplomas signed by President Grant, and the presiding U.S. president has continued this tradition ever since. In 1954 the name of the school was changed to Gallaudet College, in honor of Thomas Hopkins Gallaudet. Then, over thirty years later in 1986 after many upgrades and favorable expansions took place, the school was granted university status. Gallaudet University established itself as a thriving center for American Sign Language (ASL) and the educational advancement of Deaf people all over the world.

I learned about Gallaudet University when I began to study ASL. With my lifelong speech problem, I loved knowing that a highly acclaimed American university existed where sign language was the norm. As part of my studies I volunteered for six months at the California School for the Deaf (CSD) and that gave me a hint of what it must be like at Gallaudet. Even with my speech problem, I still had to be reminded many times to sign and not speak at CSD. It was not a quiet place, as deaf people don’t have a hearing person’s concept of sound and may be noisy, but it made me so relaxed and happy to know that I wouldn’t be forced to use my voice.

It was inspiring for me to volunteer at a Deaf school and learn about the success of Gallaudet University. However, I also learned about the far less inspiring side of Gallaudet’s past. Since its inception, Gallaudet never had a Deaf president until March 1988. And, this historic change only came about as the result of a protest where the Deaf were finally heard. It is known as Deaf President Now (DPN).

DPN began when Gallaudet University’s Board of Trustees announced the appointment of the school’s seventh president. Like all of the previous ones, he was hearing. In reaction, the students, staff, faculty and alumni managed to shut down the campus. At the time, a faculty member named Dr. Allen Sussman said, “If deaf persons are not considered good enough to run the university then what’s the point of having a university for deaf people?” (See http://my.gallaudet.edu/bbcswebdav/institution/Deaf%20Eyes%20Exhibit/Awareness-06DPN.htm) After five days of protests and news coverage that was shown around the globe, I. King Jordan, a deaf person, was appointed president.

In one week’s time, DPN became synonymous with self-determination and empowerment for deaf and hard of hearing people everywhere. I. King Jordan's leadership heightened public awareness of the important educational contributions made by Gallaudet University. Yet, although I. King Jordan became a well-known spokesperson for the deaf and people with disabilities, Jordan didn’t grow up Deaf. He was 21 when he lost his hearing so he was deaf according to the establishment’s medical concept of deafness. He came from the hearing world and spoke English. Jordan remained connected to his roots and he never actively advocated ASL or Deaf culture. However, the two presidents appointed since are Deaf and openly embrace both of these things. Gallaudet University, which stands for the educational advancement of the Deaf and ASL, now truly reflects this position.

The history of Gallaudet University is but one example of how those without a voice have to fight to not only be heard, but also understood. My speech disability has taught me a lot about this struggle too. Even in our modern age, the bias and lack of understanding toward those who are unable to speak is pervasive. As Albert Einstein said, “It is harder to crack a prejudice than an atom.” I agree, but I'll keep fighting the fight. To overcome a prejudice is well worth the effort.

Sign Language Isn’t Only for the Deaf, Part II: The Enemies of Sign Language

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

I think that trying to learn and understand ASL (American Sign Language) or any other recognized sign language is as difficult as any foreign language. The difference, though, is that the voice plays no part at all in signing. ASL, like all sign languages, is visual and manual. There is nothing oral about it.

It is because there is no speech in sign languages that there has been and still exists so much opposition to them. This stance against the use of sign languages has been born out of the ignorance and hurtful attitudes that always accompany any kind of prejudice. In this case, the prejudice has a name. It is audism.

As an academic, author, and lecturer on Deaf culture and communication, Tom L. Humphries coined and defined the term audism as an attitude held by people who hear and speak. Their opinion is that, because they can hear and speak, they are superior to those who don’t.

I have been a witness to audism my entire life. I see it frequently played out with parents who don’t learn ASL, even though they have a deaf or hard of hearing child. They expect their child to lip read or even speak. As a little girl with a horrible undiagnosed speech problem, I had the same experience with my parents. Even though I couldn’t even say my name to save my life, I was forced to answer phone calls and my parents expected me to speak normally.

Although there were deaf schools throughout the ages, they were always threatened by oralists. According to http://en.wikipedia.org/wiki/Oralism, “Oralism is the education of deaf students through oral language by using lip reading, speech, and mimicking the mouth shapes and breathing patterns of speech, instead of using sign language.”

Oralism has been an enemy of the deaf for eons. Even the church in Spain in the 1500s banned the deaf from communion because they couldn’t confess out loud. In those days the deaf of wealthy families were disinherited to keep up appearances. The nobility sent their deaf children away to schools where they were presumably being taught to speak, holding the belief that speaking was representative of the higher class and, therefore, higher intellect. This was also interpreted to mean that signing was connected to the lower class and lower intellect.

Before the oralist movement ruined the lives and livelihood of many deaf people, there were deaf schools with deaf instructors. There were deaf doctors, lawyers, and deaf people held other respectable positions. However, in the late 1800s one of the worst oralists of all time began to wield his power. I was shocked when I learned that Alexander Graham Bell, inventor of the telephone, made the lives of so many deaf people utterly miserable.

Interestingly, Bell worked on inventing the telephone because his mother and wife were both deaf. He had experimented with different hearing devices and it was this work that led to his most famous invention. Yet, Bell opposed the teaching of sign language, as well as deaf intermarriage and reproduction. As a staunch oralist, he believed that the deaf must assimilate into the hearing world.

There is a very famous event in Deaf history known as the Milan Congress of 1880. It was in Milan, Italy where oralists like Alexander Graham Bell gathered and were able to force their beliefs onto society at large. Bell and his allies were able to begin closing deaf schools all around the world that taught sign language and replace them with oral ones. Not only did this cruelly force the deaf to try to speak and lip read, but it put deaf teachers out of work and, more and more, the deaf became uneducated and unemployed.

Fortunately, there were enough deaf students and adults who still used signing in their private lives. And, with the support of the manual movement by important people like the educator Thomas Hopkins Gallaudet (founder of the first school for deaf children in the United States), sign language was kept alive.

When I learned about all of this I was so saddened to hear how the deaf had to fight just to preserve their means of communication. But, because of my personal experience, I was not shocked. Even though I grew up in the 1960s, what we would think of as modern times, I was also forced to speak when I couldn’t. I was not allowed to learn ASL either. However, by studying this history I realized that millions of other people throughout history were viewed and, most likely, felt like me. Their families and society tried to strip them of their true identity, so they didn’t feel accepted for who they were. Like me, they must have felt isolated because there was no support. Like me, many of them probably felt like failures at times, simply because they couldn’t speak.

By looking at the struggle to keep sign language alive, I hope a normal speaker can better understand the kind of prejudice that has existed and still exists towards those who are physically unable to speak. It is a prejudice that blinds people from seeing that the inability to speak for someone who is speech disabled or deaf is due to a physical limitation and nothing more. And, if anyone should suspect

that the intellect is less because one signs and doesn’t speak, I suggest they learn how to sign as well.

Sign Language Isn’t Only for the Deaf, Part I: Personal Experience, Definition, and History

Even in our modern age, I find there is still a general assumption that ASL (American Sign Language) or any sign language is only for the Deaf. So, in an attempt to educate and enlighten, I am writing numerous blogs about this subject. Since there is such an overwhelming amount of information on sign language, I will only provide you with digestible amounts in each blog. This first part contains a short explanation of my history with it, followed by a description and brief history of sign language.

In September 2011 I wrote a blog titled Another Voice that touched upon my personal experience with sign language. I wanted to learn it as soon as I lost my ability to speak when I was a pre-teen, around 1960. At the time my parents couldn’t accept that there was anything wrong with my speech and wouldn’t let me learn sign language. I, however, accepted my condition from the minute my voice changed and from that moment on I knew I needed help for it. I believed that sign language could give me that help. It would never give me a normal voice, but it would give me what we all want and need. Communication. (See: http://princessfrogspeaks.blogspot.com/2011_09_01_archive.html)

Decades later, I learned ASL and I have been teaching it to deaf and hard-of-hearing children for the last five years. In addition, I have the privilege to work with children who are not deaf but, for one reason or another, cannot or do not speak. When I am with them, I am reminded of myself as a child – feeling helpless and frustrated because I lacked the ability to communicate. With this in mind, I try to teach these children signs as well.

The children that I work with and I are living proof that sign language helps the voiceless. Yet, although it is a full, living language, many people don’t understand what it is.

Sign language is not gesturing. A gesture is a nonverbal way to communicate with the face, hand, or other body part, but these movements are culture-specific. So, the significance of most gestures depends on where they are used. In the language of signs, the hands, arms, face and body are specifically oriented to say something that will be understood the same wherever that specific sign language is used. About 200 sign languages exist in the world today. Wherever deaf people live you will find them in one form or other. Some are legally recognized, and others are not. Like English or any other official language, sign languages have a complete and unique structure. One can discuss anything using sign language. One cannot do this with gestures. Gestures are random movements and, unlike sign language, they are not part of any standardized or official form.

No one knows who invented sign language but, according to Deaf scholar Paddy Ladd, “… aboriginal Australians have the oldest sign languages – some 80,000 years.”

According to http://en.wikipedia.org/wiki/Sign_language, “One of the earliest written records of a sign language occurred in the fifth century BC.” This was in Plato's Cratylus where Socrates says: "If we hadn't a voice or a tongue, and wanted to express things to one another, wouldn't we try to make signs by moving our hands, head, and the rest of our body, just as dumb people do at present?”

Aristotle, Plato’s famous student, thought that the deaf could never speak and that speaking and hearing originated from the same area in the brain. This led him to assume that, if one function was impaired, the other must be too. Based on this, Aristotle believed that a deaf person could not learn. It wasn’t until 700 A.D. when the archbishop of York officially refuted Aristotle's theory.

Many centuries passed before anyone noteworthy publicly commented on what the archbishop thought. Finally, in the sixteenth century, Geronimo Cardano (the first physician to describe typhoid fever) said that deaf people could be taught without knowing how to speak. Cardano used a method of writing that involved icons. He taught this system to his deaf son and this led to the first book on teaching sign language to deaf people, in 1620.

Then in 1755 the Abbe de L’Epee founded the first free school for the deaf in Paris. Here the deaf were taught the sign language system that the Abbe developed, where each symbol suggested the desired concept. Almost 150 years later, though, a book called Observations of a Deaf-Mute by Pierre Desloges claimed that the Abbe wasn’t the inventor he had claimed to be. Deaf since the age of seven, Desloges wrote that signing, like the Abbe had taught, had been how deaf Parisians communicated way before the Abbe took credit for his “methodical signs” and founded his school. However, the Abbe’s prominence and his efforts in promoting a highly structured sign language served the deaf community greatly. It paved the way for the recognized sign languages that we have today. (See: http://www2.uic.edu/stud_orgs/cultures/daa/ASLHistory.html)

Like other languages, sign language is full of history and all kinds of interesting characters. For me, though, its sheer nature dramatically points out the power of our instinctual need to communicate. As Victor Hugo said in 1845, “What matters deafness of the ear, when the mind hears. The one true deafness, the incurable deafness, is that of the mind.” I look forward to sharing my future blogs on sign language with you. I hope these will help to deepen our understanding of the simple truth that all of us, Deaf and non-Deaf alike, are given a mind and it is the most natural thing in the world for us to want to express it.

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.