Communicating without speaking: Interviews
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The Breaking the ICE Conference is bringing together people who can't speak, so they communicate in alternative ways using high-tech computers and low-tech symbol and letter boards, in Toronto June 7-9.
Ahead of the conference, Metro interviewed three participants about how to communicate when you can't talk with someone and the importance of being heard.
Paul Marshall, of Hamilton, was born with cerebral palsy, which left him unable to speak and affected his fine motor movements. He has travelled to many countries, talking and empowering others as he speaks about augmentative and alternative communication (AAC).
Marlowe Horne, from Ottawa, was in a car accident at age 11, resulting in a catastrophic brain injury, low vision, spastic quadriplegia and the inability to speak clearly. Marlowe is a former co-chair of the Breaking the ICE conference.
Nola Millin, of Windsor, who has cerebral palsy, has BA, in Psychology, a honours B A, in English, and a B.A. in Disability Studies. She’s an online psychology instructor for college students and works online for the International Society for Alternative and Augmentative Communication.
Q: What does it mean to use AAC? What different ways there are to communicate?
Marlowe: There are many different devices used to communicate. The one chosen to be used depends on how a person can move or what he can move. Sometimes a letter board is triggered by eye gaze and how long the eye keeps staring at a letter before moving on to the next letter to be posted on the screen for speaking. If a mistake is made, the individual has to stare at the delete, to delete the letter and move on. How much patience does that take for the person wishing to communicate! Some people use head pointers to touch a screen or board; some use their toes and the device sits on their footrest. Sometimes a large button or a grid of buttons can hold simple recorded messages that will speak when hit i.e. “I am hungry” or “Can we change what we are doing?” The chosen device depends on the level of functioning of an individual.
To use AAC is a very high learning curve. If you are able to use AAC it means that you are probably smarter than the average Joe on the street in more ways than one. It tales technical ‘know how’ to learn about your own device. It also takes patience since your mind is working faster than your hand, head or eye. It is necessary to slow down and be methodical or it will be very frustrating and more mistakes will be made. Those around you need to know this especially care workers, doctors, nurses, community workers etc. Our movements slow us down, not our thoughts. We are not dumb just because we use AAC.
Paul: To be alive, is to communicate in one’s world. If this interchanging doesn’t happen then life becomes a daily ongoing battle – chipping away at the human spirit. Slowly, the chips become larger and larger until the spirit dies.
For many of us who use some form of AAC to “talk”, we really know the true value of being able to communicate, it is just fantastic and so wonderful. It pumps life into our souls so they can soar!
Nola: Using AAC means being able to communicate with people who might not understand my natural speech.
There are many different ways to communicate. There are several different speech generated devices. I currently use an ECO2. There are low-tech devices such as letter/word/symbol/picture boards. I carry a word board with me at all times as “back-up.”
Obviously, technology is very important to me. I rely on a speech-generated device to help me communicate. My main employment is using technology to be online. The recent social networking is great because I can communicate independently through email, instant messaging, and Facebook.
Q: What is important, interesting, fun, meaningful etc about the Breaking the ICE conference? What is like to meet a whole group of people who are communicate in different ways?
Paul: The ICE conference offers hope and empowerment to the AAC consumers, parents and professionals who work in the field. You can feel the growth and the energy developing more and more over the three-day conference. The isolation and the aloneness disappears of living in a world where speaking naturally comes so easy. The empowerment comes when we all hear someone talking with an AAC communication devices. You can hear the conference rooms loud with chatter, chatter not by “normal” human’s voices but by devices giving real thoughts and real questions from fully active human minds! This is the ICE conference, real communication by nonspeaking people. This is true empowerment.
Nola: There are many conferences devoted to the augmentative and alternative communication field but they are usually run by professionals who talk about augmentative and alternative communication. The Breaking The Ice Conference doesn’t just talk about augmentative and alternative communication but it’s a time where individuals who use an augmentative and alternative communication device are in charge. The presentations are done by people who use augmentative and alternative communication.
For me, it seems natural to meet a whole group of people who are communicate in different ways. I don’t think about it in that way. To me, I’m seeing friends who I don’t get to see very often.
Marlowe: The atmosphere is friendly and informal. There is time to talk with others and share ideas. Everyone eats together so we show each other we can enjoy a conference just like anyone else. It shows others we can do anything anyone else can do given the opportunity. We can participate and enjoy discussion and ideas; we can plan, set goals and act on them – just as I did after the first ICE Conference. Everyone takes away something different but we all leave and go back to our communities feeling better, more empowered to focus on our lives in a positive way. And two years later, we can check on each other and see how we are doing!
Q: What do you hope the conference will accomplish? For yourself or others?
Paul: I think most of us hope this conference will accomplish more overall communication and networking between users. More ongoing interaction far beyond the conference walls, is our greatest desire! When we see people writing down each others addresses, we then know we arrived at being very successful! When we see new comers and their whole being changes over the three day event, our hearts skip a beat and we know our job is done!
Nola: It’s a time to meet other people who use augmentative and alternative communication and to share thought and ideas. Also, it’s an opportunity for newer augmentative and alternative communication users to meet people who have been using devices for a while and to exchange experiences.
I want people to understand that individuals who use AAC are simply just individuals who use a different way to communicate. Be patient with us. It may take us more time to “talk” to you because we have to input things into our devices or point things out on a communication board. We deserve the same treatment as everyone.
Marlowe: I am hoping ICE will accomplish a better understanding between AAC users and speech pathologists, vendors and parents. The discussions and topics usually create more ideas leading to more motivation to solve issues. Sometimes there are things that come up that you don’t even know about or think about and they help individuals understand more complex situations or solve problems.
I am hoping that ICE will succeed in telling people that they need time and patience to communicate with some individuals. The use of many types of devices to communicate is quite interesting to see and very informative for all.
The interviews have been edited and condensed.