Monday, January 29, 2018

Stuttering

The first email arrived in the morning; the sun was just rising, barely visible through the heavy blinds covering my window. The email was delivered via the automated messaging system on my website; the sender was a complete stranger. Although I had no way of knowing it at the time, this email would be the first of many just like it.

The stranger had sent a short message: Here’s a link to a stuttering specialist in Atlanta, it read. I scrunched my eyes together, puzzled. I don’t live in Atlanta, I thought. But more important, I’m not looking for the help of a stuttering specialist. Why would a stranger assume that I am?

Stuttering is a genetic and neurological speech disability that I’ve carried my whole life. For years, I had difficulty accepting my stutter, but by the time I was in my mid-20s, I began a journey of self-acceptance. I started writing my stutter, and advocating for myself and others who stutter. I hoped that my everyday activism and writing might have a positive impact on the world. This past year alone, I wrote and published a dozen articles and essays about stuttering.

But I wasn’t prepared for the response I received when one particular piece I wrote about stuttering was published in The Washington Post  — placed on the front page of the Sunday health section, no less. After the story’s initial publication, the piece was syndicated and republished in a handful of newspapers all across the United States and Canada. I was delighted, giddy, imagining how many people would read my article and learn more about stuttering, an incredibly complicated speech impediment that only affects 1 percent of the American population.

“You’ve done it,” I whispered to myself, holding the article in print for the first time. “You’ve told the truth. You’re helping people learn.”

But then the emails started coming in — all of them from strangers. Whether they were complimentary of my article or not, most of them insisted on sharing some sort of cure.

My cousin had a stutter, one read, but this SpeechEasy device cured him! By lunchtime, there were a dozen new emails: Have you tried Prozac to cure your stutter? The next day, more: Have you heard thiamine hydrochloride might cure stuttering? Months later, they’re still trickling in: Try out this fluency-shaping program! or, Have you ever tried the Alexander Technique?

Most of these strangers are well-intentioned — a handful impolite — but what they share is the assumption that I’m actively seeking a cure for my stutter. They seem to assume that people with disabilities — which encompasses nearly one-fifth of the American population — are only concerned about finding a cure.

This is simply untrue.

The fact is, for adults, there is no cure for stuttering. Our scientific understanding of stuttering is still incomplete, so for now, researchers seem to agree that early intervention in children is the only way to actually reverse a stutter. Once you reach adulthood, there’s no miracle cure.

In the past, that hasn’t stopped me from trying. For years, I chased every false cure: vitamins claiming fluency, outrageously confident self-cure programs, delayed auditory feedback devices that proved impractical in everyday life. I also tried speech therapy three separate times — in childhood, adolescence, and adulthood — but it was ultimately unsuccessful for me.

I even pursued the most harmful miracle “cure” of them all: drinking alcohol in excess. I discovered this option when I was 15, and perusing a stuttering-focused blog. For years afterward, I struggled with alcohol as a form of disability self-medication. It took more than a decade, but I finally learned that all of these “cures” were ineffective for me. Seeking a magical solution for a lifelong disability did more harm than good.

Eventually, I began to accept my stutter as a permanent part of my speech. I realized that my disability is part of my identity — not a disorder that requires correction. Self-acceptance has been scientifically proven to positively impact the life of a person who stutters. For me, it did just that.

But then came the article, the emails. The messages. The strangers who believed I wanted nothing more than to smother my stutter with pills, devices, and false hope. The more messages I received, the more surprised I became. I had stuttered my entire life. I had been studying and writing about my stutter for years. My graduate thesis had a research component entirely dedicated to stuttering. I have a bookshelf of textbooks, nonfiction research, and self-help books, all about my speech impediment. I wanted to ask these strangers: if there was a miracle cure for stuttering, wouldn’t I know about it already?

Thinking about all this, I grew angry. I complained about the emails to my family. I commiserated with my friends who also stutter. “Can you b-b-b-believe th-th-them?” I demanded.

One night, I was up late working on a project. I turned the TV on, absently watching infomercials. They seemed to be on every channel: commercials for hair-growth serums, weight-loss pills, the perfect shampoo, the perfect shoe rack, the perfect gadget or organizer or device. I started thinking.

Over the past few months, I had been recommended pills and programs from strangers who assumed I needed a cure. I had blamed them for being insensitive, for being unaware, but I should’ve understood all along: It’s our culture that demands perfection. It’s our culture that makes people believe disabilities have to be cured.

I don’t discourage others who are disabled and hope for a cure, I respect their right to pursue whatever it is they want. But this whole experience taught me something about myself: For my own stability and peace of mind, it’s important that I not search for a cure. I hope others too will stop assuming that disability is something that needs to be fixed. And I hope our culture embraces disability for what it’s always been: Just another form of living.

https://www.yahoo.com/lifestyle/disabilities-cured-accepted-001102998.html

3 comments:

  1. [from the author of the post] I pulled my car forward. Glancing at the teller, I took a deep breath and managed to blurt out: "Can I ppppplease make a wi-wi-with-with-withdrawal?"

    The teller smiled on the other side of the glass. "Sure," she said.

    I wasn't sure if she had noticed my stutter or simply believed my repetitions (rep-rep-repetitions) and prolongations (ppppprolongations) were just indications of being tongue-tied rather than manifestations of a persistent stutter. I eased back in my seat, trying to relax.

    "What's your name?" she asked, holding a withdrawal slip. I felt sweat form on my forehead. Nearly every person who stutters has difficulty saying their own name. No definite reason for this obstacle has been found, though most assume it's because names don't have substitutions you can reach for. When I'm explaining my vocation, for instance, I can call myself a writer, a freelancer, an essayist, a journalist or an author. A parade of synonyms to turn to.

    But I have only one first and last name - especially at the bank, where there is no room for improvisation. I balled my hands into fists, ready to face the challenge: "Rachel Hoge," I told myself. Just say, "Rachel Hoge."

    "RRRRRRRRRR. . .RRRRR . . . RRRRRR . . .," I began, hoping I could power through, could force myself to make the word come out of my mouth. The teller seemed confused, squinting her eyes, leaning forward to better hear me.

    "RRRRRRRR . . . RRRRRR . . . RRRRRRRRRR. . . RRRRRRRR."

    I felt my cheeks, my neck, grow red with shame. My jaw felt locked. Now that I was stuck on a sound indefinitely - stuttering on my name, of all things - the teller crossed her arms. She looked at me suspiciously.

    "I'm sorry," she interrupted, "but before any transaction can occur, you'll need to come inside and provide a legal ID and Social Security number."

    Breathless and surprised, I managed to ask her why.

    "For security purposes," she said dismissively, straightening her back, still eyeing me. Slowly I pulled my car through. I didn't go inside. Halfway home, I pulled into an empty parking lot and cried...

    By my mid-20s, I had already experienced a lifetime of suspicion because of my stutter. Once, as a high school senior driving to speech therapy, a police officer pulled me over for speeding. After handing him my license and registration, he asked where I was headed. I took a deep breath, hoping to say: "I'm headed to my speech therapy appointment." But all I could manage was 30 dreadful seconds of "I-I-I-I-I-I-I . . . "

    The officer leaned into my car window and asked whether I was drunk. Surprised, I assured him that I wasn't. He returned later holding a speeding citation, his eyes scanning my car's interior, seeming to expect a can of beer to appear inside my cup holder.

    Years later, at a wedding, my best friend and I were getting drinks. The bartender had already poured my friend's drink before turning to me, asking my selection.

    "Mmmmmmmm . . . mmmoscato," I said. The bartender peered at us, her arms going stiff. "I'll need to see both of your IDs," she said loudly. Although we were 25 and accustomed to being carded, we both knew it wasn't our youthful appearance that set the bartender on edge. It was my stutter.

    http://www.smh.com.au/lifestyle/life-and-relationships/real-life/ive-stuttered-most-of-my-life-and-im-tired-of-being-judged-for-it-20171107-gzgudw.html

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  2. [from the author of the post] I was in my college boyfriend’s dorm room the first time I spoke openly about my stutter. Though I had stuttered since learning to speak — my deficiencies with spoken language were so evident, my mother rushed me to the pediatrician before preschool even began — I was never comfortable confronting what everyone else could hear: the repetitions, the prolongations, the blocks that lasted so long it felt as though I was falling. I was mortified to stutter and tried constantly to avoid it. I substituted words, made bizarre facial expressions — anything to prevent stuttering.

    Dating seemed unfathomable to me. How could I establish a real relationship if I spent every moment afraid to speak?

    When I met my college boyfriend, I was struck by his eloquence, his friendliness, his brains. But I fell in love with his patience. That’s how we ended up in his dorm room, schoolbooks stacked around us, and me — stuttering, crying — spilling insecurities generally reserved only for my journal. While I spoke, he waited and listened, and I felt a surge of gratitude, as if I had found the one man sensitive enough to attempt to understand my speech disability.

    Much later, after our lives headed down separate paths and we broke up, I would enter the complicated world of dating again — and find myself surprised. Turns out, my college boyfriend was not the only man who would overlook, or even embrace, my stutter. He was just one member of a much larger group of good-natured and compassionate people eager to connect.

    I began to understand that my speech impediment, which had tortured me since childhood, was actually a useful tool in deciphering the quality of a person. Did the guy at the library give a look of panicked discomfort after I openly stuttered? Did the man at the party ask for my name, only to mockingly joke, “W-w-w-w-what, did you forget it or something?” Though I left these interactions feeling flustered, my mind was full of clarity. I knew the kind of man I wanted to pursue. Judgmental, impatient types wouldn’t make the cut.

    Those who do make the cut aren’t obvious saints — they’re mostly just patient, perceptive and curious. They aren’t afraid to ask straightforward questions: How long have you been stuttering? Are there treatments available? Is it difficult to deal with? They maintain eye contact even when I’m taking time to get the words out and my eyes unintentionally seek the ceiling or the floor, searching for a way around a word. They don’t interrupt, guess my meaning or complete my sentences. They engage in conversation as if there’s nothing unique about our exchange, as if stuttering isn’t a problem to be fixed but simply another form of speaking.

    The men who are patient with me don’t fit a particular profile. Over the years, I have found goodness in people I normally would have dismissed as romantic prospects, and for this, I thank my stutter completely. Sometimes they’re in the military, or Postal Service or stocking shelves at a liquor store. There’s even been a punk-rock musician, a gym rat, a hipster, a guy who worked at Lowe’s.

    Once I do become romantically involved with someone and the relationship makes room for my disability, there’s an instant sense of transparency between us. Because my biggest insecurity is on full display every time I speak, the people I’ve dated begin to feel more vulnerable and more open about their own shortcomings…

    When it comes to dating, I certainly have no more luck than the average 20-something. But thanks to my stutter, finding a good match has become easier done than said.

    And I’m starting to feel thankful for that.

    https://www.washingtonpost.com/news/soloish/wp/2017/01/23/how-stuttering-improves-my-dating-life/?utm_term=.58439dec88ab

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  3. [from the author of the post] I’ve stuttered most of my life. At the age of 4 or 5, my mother brought me to the pediatrician and was told not to worry, I would outgrow the stutter. In hindsight, that advice might seem careless, but the pediatrician was right to make that assumption: Only 5 percent of children acquire a stutter, and three-quarters of those recover by late childhood.

    What made my situation unusual was that my stutter was already severe when I was a young child, dominating my speech and causing me distress. And even though I received speech therapy in elementary school and, years later, in high school, I never recovered. I developed a lifelong disability and became one of the estimated 3 million Americans with a persistent stutter.

    People who stutter experience an excessive amount of disfluency, or involuntary speech disruptions, stumbling over at least 10 percent of their words. (My percentage is much higher.)

    I have an idea where this mistrust toward me and my disability comes from: There’s a myth that stuttering is a reflection of poor personal integrity. A writer in Psychology Today claimed that you can detect a liar by identifying variations in “tone, cadence, and sentence structure.” According to a listicle by the online site Thought Catalog, primary signs of lying include “stuttering and inconsistencies,” “not answering right away” and “repeating sentences.”

    Both articles mention body language — such as facial expressions, head movements and eye contact — as clues about a person’s reliability and character. What these generalizations fail to recognize is that a variety of disabilities — stuttering among them — can affect a person’s vocalizations and physical movements. And although stuttering affects only 1 percent of the U.S. population, 19 percent of Americans are considered disabled and might have speech patterns or physical movements that others could consider odd. This means that if you judge a person’s personal integrity based on their spoken or physical language alone, you might be misjudging dramatically.

    Thankfully, not all strangers are quick to judge. Sometimes I’ll meet someone who regards me with patience and not pity, with respect and not condemnation. I have found that this is a small group and usually the person knows someone else who stutters — an uncle, a cousin, a husband, a friend. These strangers are kind and uplifting to me, but ultimately they are too few and far between.

    Lately, I’ve found solace in imagining a world where there is no longer a constant misreading of my stutter. I have faith this world is coming as more disability perspectives are read and shared widely. But awareness will be achieved only if people who stutter are willing to advocate for themselves, dispelling misconceptions in conversation, writing their unique perspectives and educating loved ones.

    Meanwhile, fluent and ­able-bodied listeners need to acknowledge the misconceptions they’ve been exposed to, then discard them. It’s unacceptable to meet a stranger and automatically assume their spoken and physical attributes reveal something about their character, especially if that assumption is destructive or untrue.

    For those of us living with speech disabilities, stuttering is not an indication of dishonesty. It’s an incurable disorder, and we have little power to control it.

    https://www.washingtonpost.com/national/health-science/i-stutter-as-a-result-i-have-been-mocked-insulted-misjudged-and-refused-service/2017/11/03/f43e20fc-9efa-11e7-8ea1-ed975285475e_story.html?utm_term=.3909926fd679

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