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.

Denial and Acceptance

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

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

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

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

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

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

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

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

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

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

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

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

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