KidSpirit

Simply Speaking

Simplicity and ComplexityFeatures

Human relationships are based on communication, verbal and nonverbal. Every conversation is filled with tone and timing, facial expressions and body language.

Precise word choice is easily overshadowed by eye contact or lack thereof. The right smile denotes sincerity or sarcasm. What happens when this is missing, or worse, not socially appropriate? What if the person waits so long to respond that the conversation has moved on or ended? It is simple to tell someone that you need more time, but what if they leave before you can tell them? Speaking is the most commonly used method of expression, and when it is not viable interacting with others becomes difficult.

People who cannot speak are labeled "nonverbal." This might lead you to think that they communicate nonverbally. Ironically, the same disabilities that interfere with speech impact facial expression, body position, and eye contact. The muscular disorders that impair speech by impacting the tiny muscles that control lip and tongue position also make it difficult to form a grin or frown. A movement disorder can prevent intelligible speech; it can also cause flailing limbs that keep friends at a distance. Nonverbal communication is complicated, even for "nonverbal" people.

The reason I can explain the challenges of being nonverbal is that I find speaking impossible because I cannot coordinate my muscles. I use two different computerized communication systems. The school I attend has many students with communication problems who are also wheelchair users, which both affect our interactions. Some of us speak unclearly, some of us speak with soft voices, and a few, like me, do not speak at all. Often we are surrounded by adults who, like Heisenberg, alter our conversations just by observing. Sometimes we can escape them, by speeding away in a power chair. We are severely disabled and completely normal. Our technology is like a universal translator, driven by switches, eye gaze, and jerking screen touches.

The technology Abraham uses to communicate.

Photo courtesy of the Weitzman family.

Communicating with people by using assistive technology is complicated, but a casual environment offers opportunities. The constant banter in the lunchroom is a chance for students to speak freely. There is no set topic, but it is a short list—weekend plans, annoying teachers, and unappetizing school lunch all make the top 10. Staying in the loop only requires that you stay on topic. It is never a bad time to critique the meatloaf or plan a trip to the movies. Looking across the lunchroom or down at your plate is expected. Being quiet while you eat is common. A kid with a speech delay could just be chewing with his or her mouth closed. Knowing what is expected allows a person using assistive technology to prepare a conversation starter. It may not be the most meaningful conversation, but I find a simple "Did you see the Mets last night?" can make the difference.

Of course, some conversations have more at stake than ERAs and RBIs. When is the right moment to declare your love? Is it before or after the first kiss? Do you start with an introduction or dive right in? How can you plan for a spontaneous, magical moment? If that already seems complicated, try doing it through a computer with a mechanical voice. Conversations about feelings are usually expressed with gestures and proximity, which is difficult while accessing a computer.

If we can overcome this disadvantage with carefully chosen words, a loving relationship can grow. Sometimes written expression can remove the unspoken component and simplify things by reducing misunderstandings. Writing poetry is good practice for communicating with assistive technology. Both require care in word choice to produce declarations of great meaning with few words. Poems are the perfect way to tell someone you love them. They are written in advance, eliminating the risk of a poorly chosen sentiment. Similarly, assistive technology users can prewrite their messages to reduce the risk of tiring and choosing their words for efficiency and speed over precision and impact (it can be tempting in the moment to use short words in an attempt to keep up).

Writing using assistive technology is usually slower than the pace of conversation. This can result in more than one person communicating simultaneously, which is complicated to follow. Email can simplify this by reducing the cacophony and changing the response time expectation for everyone. By normalizing the delay, the nonverbal person can be included.

Finding ways to normalize assistive tech is easy compared to translating nonverbal cues. The most complicated nonverbal cues are facial expressions. Sometimes a smile is perturbing. It can be a smirk, a vapid open mouth, or a malicious grin. It is most disconcerting when words don't match the face. Happiness felt on the inside, whispered and arrested between ventilator breaths, accompanied by a face without expression, is difficult to understand because it is hard to hear and impossible to see. Laughing communicates happy feelings to your companions without a word. Yet if the time is not right, laughing can be inappropriate or even cruel. Depending on the situation, it can ruin a blossoming friendship if it isn't explained. The potential for hurt feelings and disappointment is always present for someone who can't start or stop looking happy.

Sometimes, I cannot stop laughing. It starts with something funny, but then I can't stop. My friends understand the difference between my real and prolonged laughter, but many casual acquaintances do not. Having assured themselves that they "know" me, people will misinterpret it as a response to something amusing they didn't see or hear. In fact my laughter is not meaningful in any way if it lasts more than a minute or so. Each time someone misconstrues my laughter I feel like my translator is broken. Having trouble understanding my "response" can lead to others taking the conversation in the wrong direction.

Communication is a two way exchange, speaking and listening. While expressing my thoughts can be challenging, receiving others' can have problems as well. When you have a secret, who do you share it with? The best secret keepers don't tell. Perhaps people who can't talk are the perfect confidants. They are good listeners. They don't interrupt. They don't offer unwanted advice. Very few "speaking" can do all that. Nonverbal people hear it all—confessions and complaints, hopes and heartaches. But not every secret should be shared. In the moment, emotions seem clear and eternal. In a day or two, we are less in love, dejected, bereft, or elated. The intensity fades but few retractions are spoken. "I feel fine" is not a secret, so you don't need your secret keeper to talk to. Nonverbal people hear all of the drama and things better left unsaid, but miss the everyday discussions. Listening to secrets is complicated. Sometimes hearing things you don't want to hear is uncomfortable, like being force fed. Hating something you can't stop makes you feel vulnerable even if you are not in danger yourself.

If being nonverbal makes me feel vulnerable, sitting in a wheelchair I can't control makes it worse. Posture and proximity help define relationships. Being close enough to touch someone implies intimacy, power or both. Actually touching may be welcome or offensive. Delineating one's personal space requires tiny adjustments—closer, closer, stop—like backing a van with a trailer into a car's parking space. A person must use real-time sensing and processing of their location as well as the other person's comfort level. There needs to be continued sensing and adjusting as the conversation develops. This is effortless for people with good social skills and control over their body. For a person with my disability, these adjustments are impossible to coordinate, which interferes with the conversation instead of supporting it.

Being in a wheelchair also makes eye contact complicated as "walkers" change their elevation throughout the day. Even when you can't tell someone to be quiet, you can give them a look that says it all—but they have to see you. Often people with height challenges are overlooked, literally. The nonverbal are even less likely to catch someone's eye from a seated position.

Having difficulties like these would lead many people to give up, retreating to isolation amongst a crowd. It is simpler and less of an emotional risk. However, the risk is completely worth it; the reward is indescribably valuable.

If verbal friends can understand what makes it complicated for a nonverbal person to communicate, they can find ways to make it simpler. They can wait for an answer, even if it takes a while. They can focus on the words instead of the way someone looks and sounds. They can keep quiet company, allowing silence without judgement. Those who are nonverbal can make the effort to communicate even when it is difficult. They can choose their words with care to be sure their feelings are clearly expressed, no matter what their body language says. They can be good listeners. Friendship emphasizes what is important and meaningful, over what is common and ubiquitous. Speaking fewer quality sentences is more helpful in expressing feeling than an hour of blabber. In all these ways, anyone can build a relationship.

Abraham Weitzman is a 13-year-old New Yorker who loves Mel Brooks, Edgar Allen Poe, and Sherlock Holmes. He enjoys traveling and staying home.

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