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What everyone yearns for: Really good support to communicate…
By Andrew Bloomfield
“Typing to talk” has enabled me to have a much better life. I need more supporters so I can choose and comment on priorities and sustain my good life into the future. I also want to help others who cannot speak with their voices to express their thoughts with whatever form of AAC works for them, so that people listen, understand and respect them. That is my vision for Bridges-Over-Barriers.
I have lived with quite severe symptoms of autism for almost all my 41 years. Since 30, I have also had occasional seizures preceded by spells of pain and turmoil when I cannot control my body. But I am naturally the most exuberant person I know. I was introduced to Supported Typing (what we used to call Facilitated Communicating or FC) in 1991, when I was 23.
Though I seldom speak with my own voice, I like to use the simple words “talk”, “speak” and “say” for my communication through typing. The devices on which I type have voice synthesizers, so I and others hear me speaking through the computer voices. It has always been very important to me to have a device with a voice. I think people take you more seriously when you communicate with a machine than on a letterboard. Yes, the whole package of a device makes people take notice. I like to talk, no matter how, but the device helps.
For several years past, I have used a DynaWrite for most Supported Typing (S-T), and in the past have also used an Epson communicator and LightWriter. I am also accustomed to typing without physical support on desktop and laptop computers in WriteOutloud software. My keyboards usually have key guards. I can read and copy text independently and so learn new ideas and information. I take the words and ideas in through my eyes, my fingertips and my ears. I feel good about typing independently: it exercises and stimulates my brain. But I still need physical support to “type to talk”—to compose and express my own inner thoughts. Who knows if my copy typing will lead to independent “typing to talk”?
S-T has brought me respect from others. Before I could type to talk, nobody really could know what I was thinking. I communicated as best I could by some signs and by pointing. But it was so limiting and unreliable. I was impeded by my movement disturbances. I could sign for things I needed, but I couldn’t say what I thought and felt.
When I was about 6, some experts thought I should learn Signed Exact English rather than be taught to speak with my voice. I understood this might help me to be "heard", so I worked very hard at signing. I learned about 2000 signs, so that my teachers called me their walking sign dictionary. However, it didn't really go anywhere, because too few people in my life would sign, and also because the signs were mainly for basic needs and objects, rather than ideas. And then signing went out of fashion. Later, I did not much like picture exchange cards, as they seemed demeaning. The pictures just showed objects, not thoughts.
Before S-T, other people probably saw me as a primitive childlike person who was not a thinker. I know it must be hard to respect someone who paces and screeches, but says nothing intelligent. Some may assume that people who do not speak cannot think. People may have respected my dignity, but not my mind. I feel that, when I had a reliable way to type real thoughts, more respect came my way.
I would like people to know that I am trying to be in control of my body, even if it looks like I am sometimes not. When my body goes in the opposite way from the way I want, I must try to keep calm, even though I feel upset. From the outside, people only see my racing and pacing. Not my inner struggle. I hope that when I hold my ears, they can understand that I am really working to hold in the storm. It’s not usually that my ears hurt. I may hurt somewhere or noise may get on my nerves. I feel the pain of others acutely. S-T lets me tell people when my body is acting up. I sometimes express my thoughts in poems, like this one:
What it’s like to be me (29 January 2003)
I get the urge
to touch and pick,
and I must follow my urges.
Can you see my urges?
I can’t tell you:
I just show you.
I’m a bundle of nerves,
and a jumble of thoughts.
I’m in constant motion,
and my mind’s always going.
I wonder what it’s like to be you.
Do you wonder what it’s like to be me?
I’m a time bomb waiting to explode,
and a tear waiting to fall.
I remember being a little boy and wondering why Vickie (my twin sister and best friend) was getting things that I didn’t. I mean that she could do things while I was still thinking of doing them. One example is playing. I would want to join her, but could not move there until she had left off and moved to something new. My body was stuck. I was trying, but ended up running around and jumping. It became important for me that she could get things for us and talked for us both. It became clear to me pretty early on that she was more in the world than I. I struggled to be in the world she was in.
Whenever I could, I looked to Vickie for a lead as to what I should do in a situation. I might not understand exactly what was happening or why we should do something. But I found it was better to follow her lead. She would look out for me. I remember that I learned about humour and irony by listening for the tones of voice when my parents and Vickie talked. I liked to join in the laughs and smiles. At school, when I did the right thing by copying what others did, my teachers would say “He’s only cueing; he doesn’t really understand.” But that was the way I learned to cope.
From 1991, Vickie was my key facilitator with S-T. We traveled to many places, before she died in an accident in 1996. I called Vickie my window to the community. I think of her every day. It is most painful around the time of her death. It is in my heart the times we shared.
I think that my parents knew from the beginning that I was smarter than I could express. They talked to me and tried to understand my ways of coping. I taught myself to read from about two, before school, reading books with Mum or Dad. Vickie and I would sit on either side, and follow the printed words as they were spoken. It felt like a world of mysterious words that I could enter. A favourite activity was to read through big dictionaries which had little pictures to go with the words. I still love to read the many books and magazines in my home.
But I have felt that others pitied me. Nobody can respect you if they pity you. At school my teachers expected so little of me. I might have learned more if they had respected my mind’s potential. The Principle of the Least Dangerous Assumption proposed by Dr Anne Donnellan in 1984 says that it is better to presume competence. This means that it is more dangerous to assume a person doesn’t understand than to assume he does. If my teachers had understood the principle, they would have given me more opportunities than just doing easy puzzles and tying shoelaces.
S-T is so liberating. I was locked before it. I had to hope others would see my intelligence in my eyes and behaviour, but these were not reliable. I saw that nobody really knew how smart I was, but I had no way to express myself. It felt like I was observing my own life but not controlling it. When others did not understand me, I was sad and frustrated and agitated all the time. I got angry. I was hopeless: I never expected to find a better way. A few people really looked inside and past my autism. Until S-T I did not know I thought in words that others could understand; I was just absorbing their words.
I remember the first time I used S-T. It was with Martha. I remember trusting her and letting her show me pictures and ask questions. I pointed to and typed the right words. I spoke for the first time in words that made sense. I was very surprised by S-T. Now I really knew I could spell and read, and other people saw it too. Now I had thoughts. Now I could talk. The thing everyone yearns for is really good support to communicate.
When I had been using S-T occasionally for two years, a friend asked me to “speak” to a room full of special education teachers. Vickie drove me with my Epson communication device to Hamilton, and two of my friends were there too. My device had a voice, and the words I typed were also projected on to the wall for all to see. I had prepared things to say and also answered questions the teachers asked me. My main message to them was “Autistic children are smart: teach them to read.”
For the past nine years, a very good friend has visited my home for S-T sessions about twice a month. This allows me to reflect on my life with someone who is not an everyday part of it. We knew each other before either of us knew FC or S-T. She is a very good facilitator who gives me both physical and emotional support. With her support, I was able to express some anxieties about the safeguards and reassurance I needed for my good life to continue.
My life now is excellent. I have my own home and it revolves around me. I know everyone who comes here is friendly to me. My parents, my circle of friends and my housing trust listen to me and respect my choices. My biggest safeguard is my Aroha entity of personal empowerment and support formed in early 2002; it is like a self-directed support corporation or microboard. I am comfortable and safe here. My excellent life helps me to cope with my inexcellent body! My garden is heaven on earth. My dogs Amy and Yukon make friends for me. I’m happy with our progress. Well planned and not stressful. I grow into each step. All this is possible because I can talk through typing.
I wish that others could have this kind of help. Once my own life was flowing smoothly, I was able to think about other people who needed special AAC support to express themselves and be understood. Since early 2004, I have hosted regular gatherings of other communicators, usually in my own home or other peaceful locations in my city. In May 2005, I felt inspired to think of starting a place of refuge and organization for communication support and life planning for people who live with autism and can be helped by AAC. I composed this poem:
I am dreaming of a place
where we can come together,
to be together,
to communicate together.
I am dreaming of a place,
where I can be a leader
and a friend,
a person who helps
and a person who needs help.
I want to dream with you, my friend,
To build that bridge you told me about
Because we both like bridges.
Dream with me
And we will make that place I dream of
And the bridge in your dreams.
(8 June 2005).
We named our communication support group Bridges-Over-Barriers. It is about building bridges, not walls. I love the image of a bridge--like that of a door or a window. S-T is not a “cure” for autism, as some enthusiasts once thought it might be. I am not interested in a “cure”. S-T is a bridge that takes me from my island to the mainland. I think I am visiting the mainland, not living there, and visiting is fine. My good friends and my dogs also bridge the gap between me and the rest of the world.
There are now about 12 members of Bridges, most of them in southern Ontario, but including some who have moved to New Mexico, Nova Scotia and France. We have a worldwide network of friends who wish us well. Our friends, when asked to support the dream of Bridges-Over-Barriers, have been generous. Their gifts provided some seed money for us to offer small bursaries to pay for intensive facilitation for new communicators or for new communication assistants to attend workshops.
At present, we have some special projects on the go. One is to produce a DVD about Bridges-Over-Barriers and its value as a support group so its members know there are others like them and can make key decisions about their own lives. Another is developing and testing a Bridges IT system that allows our communicators’ words to be combined into a discourse for each session, with visual and audio projection and a “hansard” record of all that is said. Such an infrastructure system will help us to focus on ideas and interactions, rather than the mechanics of communication devices. We continue to speak up about S-T and the need for deep listening to people who may be vulnerable because they cannot use their voices—through newsletters, support for training and networking, special events, and advocacy for communication assistants.
I want people to know I have something to say worth hearing, not just to talk and be heard. I don’t feel secure if people don’t believe I can communicate my own thoughts. I use S-T to express myself, but what do others do if they don’t have that? That would be so frustrating. In an ideal world everyone would live with communication assistants for ever at all times.
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Andrew Bloomfield directs his good whole life lives in his own home in Guelph, Ontario, Canada. He hosts regular gatherings of communicators in the group called Bridges-Over-Barriers (http://www.ont-autism.uoguelph.ca/bridges.shtml with links to newsletters). Andrew’s words and poetry are published in In My Mind: Thoughts and Words of Andrew Bloomfield (2006) and Odyssey: ten years of a good whole life in my own home (2008).