A Presentation by Paul Marshall and Shirley McNaughton

On AAC

CASHRA '98 June 2, 1998

What it Means to be a Person Who is Nonspeaking

By: Paul Marshall

It is quite an honour for both of us to be here, talking to you about a topic that we feel so deeply about, Augmentative and AlternativeCommunication. I along with Shirley am on the Board of Directors for Blissymbolics Communication International. (BCI). I maintain BCI's website and two other web sites. I am hoping to briefly show you a couple of them at the end of our presentation. Both of us are involved in a computer application called BlissInternet which we will be talking about before our time is up. I also work as a research assistant at Bloorview MacMillan Centre one day each week in their Microcomputer  Applications Program in Toronto. For you who are wondering what I am using for this presentation, I am using a normal laptop with a dectalk multivoice unit.

Before we go into the body of our presentation, Shirley and I would like to introduce two very special people. We couldn't do half of what we both do without their ongoing support and love - Shirley's husband, Bob McNaughton, who it seems is always waiting in the car! My mom and also my friend, who is always a source of empowerment to me and always there giving a lot more then she receives! It is with the support of these people that we are here.

Talk, talk and more talk, that is all we can hear around us. Who are we? We are the silent voices that live in your cities, towns and villages across the nation. We are the nonspeaking population  who have to use some form of augmentative and alternative communication. The slides that are appearing as I talk will show you a few of us.

We are a child, a teenager, an adult, with countless dreams, hopes, wants and needs. We want to fit in and have a lifestyle with quality and meaningfulness, just like you. We aren't asking for more but we aren't asking for less. We have no choice but to live in silence day by day. The hours will go by and not a word will come out of our mouths. Who are we? We are a son, a daughter, a brother, a sister, a parent, a grandparent. Yes, we are a member of your community.

Our society can provide the liberators that unlock locked doors - opening countless doors to the outside world, for persons with all types of limitations. The main and the vital key unlocking many doors is the key of communication. Without the key of communication any person lives as a very trapped individual. This key is so much taken  for granted that we often  overlook it. Here is one example: I weekly go to Toronto on the bus from Hamilton. Many  times, I see and hear my fellow riders reach for their cell phones. I just shake my head because it is so far removed from the lifestyle that I was given to live. Through many locked doors we have come. Through many locked doors we need to go. The world is still a foreign land to many of the issues we face as nonspeaking and handicapped individuals.

As we go into the twenty-first century we must realize it is our future and it is our duty to set up the blueprint for a better tomorrow. Although many people will help, the leadership for mapping our future will be on our shoulders and no one else's.

Let's face it, very few people meet the norms of any society. In Canada three out of ten Canadians have a reading problem. This greatly alters their opportunities. Health problems, employment cut backs, abuse in families and countless factors alter peoples' lives. People with "handicaps" are members of a subculture.They are viewed as not meeting social standards.

It is vital that we build a society that is ready and willing to includepersons with disabilities. I would like you for just a second to try to write with your non-dominant hand. This is what it is like for any person with a disability who is trying to fit in. We are always trying to fit into our communities with "non-dominant" hands when our communities are using their dominant hands.

I am sure each of you in this room, enjoys when you get the chance to have some time to do nothing in your busy life. I would like you to think what it would be like if you had a life time of doing nothing - no demands and no responsibilities. I am quite sure you would go crazy. (In my case I would go crazier!) As human beings, we were made to do stuff, be active and take part in the world around us. We all know, when we have willing hands that are not allowed to do anything, our community is the poorer. Persons with disabilities are often deprived of opportunities to contribute. We are so often on the receiving end of everything but hardly ever on the giving end. A good per cent of nonspeaking individuals couldn't be full time workers and that includes myself. It is too hard to put in 35 hours a week at a job and still have the strength to maintain our highest level of independence.

It's time for us in Canada and in other countries to really look at the many options we have for including disabled persons. We will all benefit by providing them with meaningful work. We often measure ourselves by our pay cheques, our houses, our cars and the holidays that we are able to take, not by how much we are able to give back into our communities, not by opportunities for volunteering and especially not with a mind set of doing things for no money at all. There is an army of Canadians with limitations that if tapped, would create more jobs within Canada. If only we could sit back and really see the resources and unmet needs that are sitting on Canada's door step, we would create jobs like we wouldn't believe.

We shouldn't look for an easy way of life in a society filled with all ranges of disability. We need to ask ourselves, as a society, "Are we setting the standards too low for persons with  disabilities?" How do nonspeaking individuals fit in? When society sets low goals, we are not expected to go to college or to university, get jobs, get married, have families or be owners of land or houses, and the list goes on. It is easy to have a feeling of very low self-worth if one is a member of the nonspeaking subculture. Not many of us are allowed to question and be given the opportunity to grow. Without this option being given to this cultural group, it will always be an untapped resource. Is this what we need or want?

For any person to have self-worth, there is a need to have a purpose. Without this our lives become meaningless and full of self-pity. One of the greatest things that society can give to anyone is to be needed and to have a feeling of usefulness in one's world. This culture barricade badly needs to be addressed as we move ahead into the twenty-first century.

As we are discussing different issues that affect persons who use some form of Augmentative and Alternative Communication, we need to remember that a speech impairment could affect anyone at anytime through a sickness or an accident. Any one of us can be thrown into a life and a lifestyle of living with a disability. In my case, it is because of a lack of oxygen at birth. I just didn't want to come out into this cold world! From birth I was tagged with the label of Cerebral Palsy and forced to develop a different lifestyle if I was going to make it. Through life I have had many blessings that helped to develop the inner person who lives within this "disabled" body. My parents and my two older brothers never viewed me as a disabled or handicapped son or brother.They didn't treat me any differently. Our parents ran a market gardening farm and my brothers and I were expected to pull our weight with the daily responsibilities of the farm duties. At an early age my dad and my two older brothers started teaching me how to drive the tractors. In my teens, I was working land by myself. I was included in everything within our farm lifestyle  If I couldn't do something, I was put at a job that I could do. There is no doubt in my mind, if I hadn't grown up in a farm environment and learned how to cope with my disability, I would probably be in a wheelchair and by no means doing the stuff that I am deeply involved with.

When I look at Human Rights as they relate to persons with disabilities, especially the population of nonspeaking of Canada, I reflect back on the environment with which I was very blessed. Sit back and think - what would it be like if, when you got up tomorrow your voice and most of your physical capabilities were gone, not for a couple of days but gone forever. Who would you be? What would you do? You would basically be the same person after you accepted all the changes. You probably would keep some of your individualized status in your work and community because you would have some degree of relating to your peer group. All of us in this room, have some level of status that helps us get along in the world. We all lead very full and productive lifestyles.

The story is quite different for most of the persons who are nonspeaking and have all kinds of daily physical and communication limitations. Most of us sit in wheel chairs. We are the nonspeaking people across this nation. You don't hear much from us because many of our voices are silenced. We look to the dawning of a new horizon, a new vision -  to be included, to be treated with dignity and to be given opportunities to reach our own levels of independence. No, we aren't asking for the things that can't be done in society, but for the things that can be done.

Unlike the general population, our chances of getting a good education are poor. Few of us are totally literate. Shirley will go into this further after she tells you a bit about Blissymbols and about those who use them.

To view the symbols that Shirley McNaughton went over in her presentation, click here.