Defining who gets to talk

It is impossible to place monetary value on the ability to talk. Many of us at Swat have experienced the feeling of being silenced, like your voice doesn’t matter and cannot be heard, but few of us can fully comprehend the physical inability to say anything. When a lack of ability to speak occurs, sometimes individuals can gather together and rise up against the power structures attempting to tear them down. However, how does one protest such injustices if they do not possess the ability to speak?
Most people are never confronted with the concept of alternative forms of verbal communication.We learn to talk at age two; we continue speaking for the rest of our lives. A physical inability to speak is not something most of us are forced to face.  We can all point to Stephen Hawking, a figurehead for non-verbal individuals, so we know that speaking can be a privilege, but our understanding often stops there. It is imperative that people understand how critical alternative communication devices, their implementation, and their innumerable benefits are in order for the basic human right of expression to be expanded into the non-verbal community.
According to an article in Tech Financials, “[Hawking’s] death comes in the year of the 70th Anniversary of the Declaration of Human Rights. Over the course of his adult life, Hawking came to represent the epitome of what effective communication with Alternative Augmentative Communication or AAC systems really means: gaining access to the human right of communication enshrined in Article 19 of the Universal Declaration of Human Rights. Today, many who need AAC still lack access to the technology and the support they need to use it. It’s time for that to change.”
Alternative and Augmentative Communication, refers to any communication strategy or device that allows someone who does not possess traditional speech to use language.  As an essential tool for participation in any setting, language and its acquisition is critical for development of many additional skills that involve interacting with the world. When children do not immediately develop this ability, tools such as AAC implementations can become incredibly helpful.
While unaided systems are often looked upon as preferable — as they do not require or depend on external resources — at times, severely disabled children may be able to benefit more from an aided system such as a talker. Talkers fall under the AAC subcategory of high-tech communication devices, often similar to tablet computers with touch-screens that allow a child to traverse through different pages of icons representing expressions or nouns. When each button is pushed, the talker will verbalize the oral representation of that button, communicating that button’s message.  These devices range from very easy to use for the child (one button on the screen) up through very complex and can cost upwards of $10,000, which produces a particularly harmful situation, giving voice exclusively to the disabled with enough money to buy the ability to talk.
One common misconception concerning the use and implementation of AAC with children with autism is that it will prevent a child from attempting traditional speech.  This theory has been proven to be false, as studies actually show that AAC increases the likelihood that a child with autism will attempt speaking — if speaking is within their mental and physical capacity.
Behaviorism, commonly referred to as behavioral psychology, is a theory of learning based on the idea that all behaviors are acquired through conditioning, which manifests itself via interactions with the environment. AAC can be critical in providing nonverbal children with the ability to articulate such responses and thus show they have internalized things via this theory of leaning. If teachers, parents, and aids can comprehend the responses, knowing even small details concerning how a child is reacting to a different situation can render teaching them far more effective. For example, one of the first things kids learn to express when they are learning how to use their talkers is preference: “Do you like ___?” An understanding of a child’s likes and dislikes will allow the people in their life to cater more directly to their needs. In addition, some children, if they are unable to communicate, could possess the ability to perform certain academic tasks or accurately perceive situations. They may have internalized the condition behavioral theory describes and accurately interpreted it; however, without the ability to communicate, the outside world may never know of such knowledge and ability.  What if the world’s next genius is trapped inside a body that has never been given the chance to communicate?
The practice of teaching a child to use their AAC device is often explored through the lens of behavioral theory.  Although the talker itself does not correct the student, as the student is in control of his or her device, teachers and aids instructing the student on how to use their talker will often employ a conditioning curriculum, refusing to respond unless the student uses their talker and rewarding appropriate usage. For example, last semester I observed a nonverbal child, Aaron, with ASD who used a talker. His aide would refuse to give him his break if he did not go through the proper steps of asking for one.  In order to receive his break, Aaron would have to press the button that says, “Something’s wrong. I need a break.” His aid would then ask him what he wanted to do with his break, and he would have to respond with an appropriate break action such as “iPad,” “computer,” or “Play-Doh.” If he did not respond in this exact way, he would not receive his break.
The more effective the tool or talker, the more advanced technologically it is, the more expensive it probably is. The increasingly costly interventions are often the more effective ones, but aided AAC methods such as talkers are also very heavily dependent on technology — if they break or glitch and the parents cannot afford to fix them or purchase a new ones, the kids, who may have become reliant on the devices, are no longer able to communicate.  Although they grant the user invaluable communication tools if they are working, if broken, they can cause extreme frustration that can manifest in tantrums and a refusal or complete inability to communicate at all. The devices can also be bulky or heavy at times and can require a long period of time to communicate a short thought. It is imperative that these devices become less expensive and more accessible for the general population. People who cannot afford a $10,000 device may still have children with non-verbal disabilities.
I have had the privilege of observing Aaron for the past year and a half.  He just gained access to a talker this past year. At school, this is Aaron’s first year using a talker, and his teachers are realizing he possesses so much more language than they previously believed. Although he likes to mess around and play “animal sounds”  a little too frequently, he also is able to accurately answer auditory processing comprehension questions and allow his personality to show through. Now, his aids do not let him take a break unless he uses his talker to ask for one, and he is needing progressively less and less reminders to use it in lieu of knocking on the table, flailing his arms, or making noises in attempt to communicate his thoughts.
Aaron also participates in TOPS Soccer, where he does not have access to a talker.  When he comes to soccer, Aaron leaves his talker in the car because it is an expensive piece of technology that his mother, logically, does not want to get hit with a ball. Naturally, this results in Aaron’s behavior at TOPS presenting differently from how it does at school. He flails his arms more frequently, often reaching for and sometimes hitting other kids when looking for attention.
Verbal communication, a practice we internalize as small children, is something we take for granted every day. Being forced to rely on a device in order to talk sounds like a painful experience, yet it pales in comparison to being forced into silence with no way to transmit what is inside your head. Freedom of expression, as it is delineated in both our Constitution’s First Amendment and the Universal Declaration of Human Rights is, to most of us, a freedom.. AAC devices are expensive and therefore not always an option. It is imperative that this tech become more accessible because expression is an inalienable right and should not have to be a privilege.

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