Riding My Bike - From Shame to Freedom

About the presenter: Lisette Wesseling BA., BMUS.hons, LGSMD. Lisette earned a degree in psychology and music from Auckland University, before pursuing further vocal studies in Australia and England. She now lives in Wellington, New Zealand where she teaches voice to adults and children in her private studio. She combines teaching with a professional classical singing career around New Zealand. She also works part time as a Braille awareness consultant with the Royal New Zealand Foundation of the Blind. Lisette lives with her husband Neil.

Riding My Bike - From Shame to Freedom

by Lisette Wesseling
from New Zealand

People often ask me: which is more challenging, being blind, or being a person who stutters? I'll answer that later. But the interaction between these two aspects of my life has played a very important role in shaping my values about stuttering. You might ask: how can someone who deals successfully with blindness, not handle stuttering in the same way? The values and beliefs I was given as a child about both were very contrasting, creating much shame about stuttering, but not about blindness.

I was born in the Netherlands and lost my sight in infancy. My parents were devastated at having a blind child, but over time, they came to accept it. They taught me to be proud of who I was. I was taught that I would read with my fingers instead of my eyes; how to find the back label on my sweater so I wouldn't put it on the wrong way; to listen for the way sound bounces off walls so that I wouldn't bang into them. I was simply blind, and could explain that to anybody who asked.

I remember my dad teaching me to ride a bike. He began holding onto the back as I wobbled away on two wheels. Eventually I went too fast for him to keep up, and he let go. I zoomed off happily on my own, completely free and quite delighted with myself. I never banged into walls, because I could hear when they were approaching, and would turn just before I reached them. Mum couldn't bear to watch.

My parents believed that a blind child should have the same freedoms and responsibilities of any other child. I had to dry dishes, do chores, be polite, eat my greens. We talked about being blind. I had professionals work with me. Blindness was simply part of me, like hair colour.

But there was another aspect of my childhood which was very different, and much more hidden. From an early age, I knew my words would sometimes get stuck. I learned by hearing another child at kindergarten do it, that it was called stuttering. I knew I did this too, but nobody ever mentioned it, and so I thought it was something you were not supposed to talk about. They talked about my blindness all the time, but never about stuttering. The blindness eclipsed it. Sighted people can't imagine anything worse than not being able to see, so that's what they focused on. I learned that you don't talk about talking. That was the beginning of my shame. Being different was ok, but NOT if that difference relates to how you talk.

Stuttering and blindness are different animals. For me, blindness is permanent and easy to predict. I am always blind, but I don't always stutter. I can stutter on one sound, and then not stutter on that sound the next moment.

Even at a young age, I developed ways of covering up stuttering. I worked out that if I jumped whenever a word got stuck, it would come out with the jump. This seemed pretty clever to me, because not only did I get the word out, but nobody would hear me being stuck. I FELT stuck, but the jump helped me get unstuck. I became known as a jumpy, bouncy child. People praised me for being so happy, so well adjusted to blindness. That's all they saw. People liked my jumping, so I did more of it. I also learned that when I sang, I didn't get stuck. I was a child who loved to sing and jump in time with her singing or speaking.

At school, I learned all the skills I would need to live successfully as a blind person. I learned to read Braille much as any child learns to read print; how to tie my shoe laces; how to get around by myself, how to use a typewriter and later a PC with screen reading technology. I even learned how to read Braille music.

But I did not learn how to live as a person who stutters. My teachers and parents weren't even sure whether I really stuttered. A speech therapist told them I probably didn't, that my brain went faster than my mouth and I would outgrow it. They were told not to call it "stuttering," since that would somehow make it come true. Despite this roaring silence around my stuttering, I always felt judged for it. I was free to ride my bike, but not to just talk, stutter and all. Adults would repeat my sentences back at me, as if to correct the way I had said them. "Slow down, think before you speak." They were not listening to what I was saying, but to how I was speaking.

My hiding tricks got more sophisticated the older I grew. They developed into saying um, coughing, or pretending not to hear if I thought I would stutter.

When I was eight, we emigrated to New Zealand. It was not difficult to learn English as a second language. I was a confident blind child, academic, curious, talkative, loved music, ready to take on the world. But my hiding tricks transferred over very easily into English. Confusion about my stuttering persisted, and I was assessed by a speech therapist. I was still just learning English then, and devised the following clever plan. If I thought I was likely to stutter on something, I would just pretend I didn't understand. By not speaking, I could avoid stuttering. Or I could stall long enough for the stuttering moment to pass. I wanted the therapist to say I didn't stutter.

I'm afraid it worked. The assessment stated that I indeed did not stutter. To my great relief, my hiding was working.

I never talked about stuttering with my friends. Even my best friend didn't know how much it really bothered me. Today, many of those friends would still say I didn't really stutter. Some might say I sounded hesitant, sometimes nervous, a little fast, but never that I stuttered.

Fortunately, I WAS given opportunities to develop my singing talent. This was something I COULD do with my voice which people seemed to like. But singing was also tainted with the shame of stuttering. People would point out how beautifully certain famous singers speak. I was discouraged from talking on stage, because my speaking style just let me down. "Just sing, and let someone else do the talking".

I also felt very alone. There was one adult man I knew who stuttered, but I was far too scared to talk to him about it. His name was Lyal, and the kids would often talk about him as L-L-L-Lyal. I didn't want them to talk about me as L-L-L-Lisette. I was always terrified somebody would associate me with him.

If you could paint my childhood, there would be very bright images contrasted with very dark shadows. Everything I did was tainted with a fear of being found out, a fear of being exposed as someone who stutters. While doing all the singing, the outdoor sports, the academic work, the fun things... I was terrified somebody would learn my secret. I was working very hard to find ways of passing as fluent.

Things came to a head in my last year at high school. A teacher finally said that my hesitations were interfering with my ability to do the oral French assignments. She suspected I stuttered. I was mortified because I had failed in hiding my secret. The appointments were at 9 AM at my old primary school. I had to be dropped off an hour early so my mother could go to work. My shame about stuttering was so deep, that I hid in the cold bathrooms for the entire hour so nobody would ask me why I was waiting there. I would slink into her office right at 9, glad to be warm again.

I had six weeks of speech therapy with a very nice lady who, for the first time, talked to me a bit about stuttering, and taught me the Camperdown smooth speech technique. It never worked outside the therapy room, and I'm not sure my speech changed much. But she treated me like an adult and didn't lecture me or make me feel stupid. We didn't talk about hiding or shame, but it was a very small light in a very dark place.

I left school with these values:

• Stuttering is bad - not allowed.
• No one must ever hear you stutter
• You need to fix your stuttering.
• Stuttering will limit your career choices - singers shouldn't stutter.
• You are a terrible speaker.

While studying at university in 1993, I attended a two week intensive fluency course, again based on the Camperdown method. This was and remains the only professionally-offered therapy in New Zealand. Sharing common experiences about stuttering with others while hanging out in the evenings was wonderful. Many of them wondered why I was there, because they didn't hear me stutter. I was still hiding, but this aspect of stuttering was not addressed at all.

I got very good at smooth speech, but I don't think it addressed the real cause of my problem. The shame, fear, guilt and confusion were still there. Smooth speech, for me, just became another way of trying to be someone who doesn't stutter; of hiding and covering up a real part of me. I vowed I would work so hard that I would never stutter again. I attended all my follow-up appointments where I spoke without stuttering, practiced hard every day and attended speak easy self help meetings. For a while, it worked great and I was fluent. People were no longer ashamed of me because I didn't stutter anymore.

A few months after the course, the fluency started to wear off. It's as if the magic faded and I found myself unable to use smooth speech when it really mattered. It also started to feel like taking a shower with a raincoat on. I could never speak with passion or authenticity when I used smooth speech. My fear of being found out, my shame at still stuttering were very much alive. I worked hard at it but sometimes, I just couldn't use the technique. I felt I had failed. The therapists had told us that if you use the technique properly, you won't stutter. I interpreted that as "you shouldn't stutter. They also said that this tool is perfect and if it's not working, YOU'RE not working hard enough. The prescribed remedy for relapses was more smooth speech, just work harder!

I moved on to further study and professional singing work in Australia and England. Hiding stuttering still formed the backdrop to everything I did. This was difficult when I had to recite the words of arias in class, introduce myself before a performance, or call up about auditions. Since nobody knew me there, I could pretend to be a singer who didn't stutter, because Good singers shouldn't stutter, I thought. I went back to my old hiding tricks, my shame still very much in tact and probably even stronger. Not only was I still stuttering, but I had also failed at speech therapy.

In 2002, things again came to a head. I was teaching braille in a London school, and reading stories to the children was torture. I was using every trick in the book not to stutter, including foot stamping, changing my posture, switching words, coughing... But you can't change what happened to Cinderella or Little Red Riding Hood by switching words. I realised I couldn't go on like this.

Thanks to the internet, I found the British Stammering Association's (BSA) brochure on interiorised or covert stammering. For the first time, I read my own story. It said that even if you hide it so that most people don't know you stutter, there is specific help available.

At the BSA conference that year, I met people who were very comfortable with their stuttering. They felt that society has some responsibility to understand and accept stuttering. I had never heard such perspectives before. It was there I first heard somebody tell me "it's ok to stutter." I nearly fell off my chair! It had never occurred to me that fluency didn't have to be the goal. I never knew there was any other kind of speech therapy for stuttering apart from smooth speech.

The group therapy I received at London's City Lit introduced me to new values about stuttering and how to apply them. For the first time, I started to tell one or two friends that I stutter. Mostly they didn't believe me, until I explained how much I hide it. I also let myself stutter a tiny bit more. This was such a relief. Believe it or not, this somehow made me stutter less. They taught us some ways of dealing with a stutter when it does happen.

The support group I attended in London wasn't focused on fluency, but just on gaining confidence, talking about stuttering, supporting each other as we lived with it. What speech controls people used, if they used them, was not really important.

I had really begun my journey and was exposed to new values:

• It's ok to stutter.
• The world doesn't hate stuttering.
• I don't have to fix it.
• I have choices about how I deal with stuttering moment to moment.
• I CAN choose to stutter with less struggle, but I don't HAVE to monitor my speech every second.

Seeds had been planted, but they needed a lot of watering before they would bear much fruit.

In 2004 I got married, and returned to NZ. I began singing around New Zealand, and developed my vocal teaching practice using the confidence and strength I had gained in the UK. It felt very strange to be back with family and friends who had known me as someone who didn't stutter. I started teaching music courses at my old primary school, with some of the SAME teachers who were STILL there. Returning to old physical places brought me back to old emotional places, and I started to live by old values again. My stuttering became more unmanageable, and the hiding tricks came back. I never went as far back as when I was growing up, but it became apparent to me that I needed a professional partner to help me travel the journey of self acceptance, personal growth, and more easy open stuttering. The online support I received through various email lists was great, but not enough.

In 2008 I decided to attend the NSA conference in New Jersey. My plan was to spend two days in New York, attend the conference, meet people, find a speech therapist who really understood stuttering from the inside, and see if we could work together long distance. One thing I didn't do so well was being honest to friends about where I was going and why. My family knew, but I told most of my friends I was going to a conference about braille. I didn't tell my work colleagues I was going anywhere. I realised how deep my shame still was by the amount of lying and covering up I was doing.

At the conference, I met many people who seemed to stutter with dignity. I heard children stuttering openly, and felt sad for the little girl who never had that experience. The welcome, acceptance and understanding I received was unbelievable.

I restarted my journey there. I am continuing it in New Zealand with the help of the speech therapist I met in New York. We work using Skype and email. Having somebody as a coach, mentor, therapist and friend has helped me do many amazing things over the last few years. I completely stopped lying about stuttering. I tell all my friends and most work colleagues that I stutter, even though it is still hard. I gave a talk at my church about blindness where I mentioned that I stutter. I recorded a programme for Radio New Zealand about Louis Braille, for his bicentenary in 2009. I told the producer that I stutter, - another first - but she chose to edit the stutters out. They were quite happy to hear my fingers reading Braille, but not so happy to hear one or two little stutters.

I am learning I can speak a bit easier when I want to, but I also accept I can't always do it. I know I have choices about how I speak. I am learning I can be a good communicator even when I stutter. Communication is about being authentic, having a message with clear ideas, using good inflection, not dropping your head in shame when you stutter, even if you can't see. Not hiding anymore sometimes feels so good.

I realise that the person who hates my stuttering the most is me.

It's a journey of personal growth to freedom of speech. I am trying to re-discover that freedom I felt as a little girl riding my bike, stutter and all. I am reframing how I feel about stuttering; and learning how to stutter without panic and shame. My new values are becoming stronger guiding voices: stuttering is allowed. It's ok. You don't have to hide it. You can communicate well even when you stutter. For me, living with stuttering is incredibly tough, much tougher than living with no sight. But hiding a part of myself is really no way to live either. I can't hide the fact that I'm blind, so why should I hide my stuttering?

Living with stuttering takes a huge amount of courage. It can leave you feeling alone and full of shame every day. Those are dark places, but you don't have to stay there. Reach out, find good help from wherever you can. You can find freedom from shame too. Find that old bike and start riding.