The Inclusion Institute at Syracuse University

Review: Lucy's Story: Autism and Other Adventures, Lucy Blackman

"[L]et us tell our stories and recognize them as legitimate. Let us listen to the stories of others, and appreciate them as additions, not as contradictions. Most important, as we interpret the future and reflect on the past, let us proclaim the value of those whose stories so often go untold" (Ferguson, Ferguson & Taylor, 1992, p.301).

Too often the stories of people who use augmentative/alternative communication methods go untold. As these stories remain silent the practices and attitudes of those of us who support, love and share friendships with people with disabilities remain untouched by the lived experiences of many who have important insights to share. When these autobiographies surface, we make important moral and political choices to

listen

and acknowledge or to grudgingly attend and dismiss. Lucy Blackman's compelling story of her life with autism and her communication through the use of facilitated communication is a story that needs to be heard. As people who hear her story, we might consider how to work actively toward an inclusive society where people with disabilities have the support and the right to communicate and participate in equity.

Lucy Blackman is an autistic woman born in Melbourne in 1972. She has completed her BA in literary studies at Deakin University in Geelong. Lucy's Story is her first book. In Lucy's Story, we read about a young woman, who at the age of fourteen began communicating using facilitated communication. Lucy's mother, with much skepticism, took Lucy to the DEAL Communication Center in Australia for a communication evaluation. With Rosemary Crossley's and her mother's support, Lucy was able to point reliably to pictures and eventually to a keyboard. Through much practice and determination, Lucy learned to type independently in 1991 at the age of eighteen.

Upon reading Lucy's Story we gain insight into how she experiences many aspects of using augmentative/alternative communication and autism. Some of these include: her experiences with sensory input, her time spent in segregated and inclusive schools, how she experiences the use of written, spoken and typed language, her experiences in learning to type, and how typing has changed her life

Sensory Experiences

It is through the autobiographies of people with autism that we have learned if the many sensory experiences that so often are central to how such people describe what we call autism. Donna Williams, an autistic woman who uses spoken language, has written many books telling of her experiences with autism. She was among the first to bring attention to issues such as difficulty with intentional movement, lighting, noise and touch. In her book Autism an Inside Out Approach (Williams, 1996), she shares,

My autism related difficulties took me on a journey where sensory hypersensitivities made certain sounds, textures, patterns and colors my personal and private haven. In the hands of other people who would indiscriminately inflict upon me the sounds, textures, patterns and colours I found overwhelming and intolerable, my sensory hypersensitivities became my social hell (p.5).

The running narrative embedded throughout

Lucy's Story

which describes how Lucy experiences sensory input reveals many similarities to Donna Williams' experiences. Reflecting on her childhood, Lucy shares:

"I suddenly was able to draw the obvious conclusion that I had never felt my body comfortably in someone's embrace. My skin response had been as much a barrier as a wire cage. I had learned to endure, but not enjoy" (p.6).

As Lucy began to type with support, this experience changed. She says,

"In adolescence I was able to learn to tolerate localized touch on my hand, arm and wrist while I made intelligent controlled movements that related to visual language processing." (p.6)

Later, Lucy tells of her sensory experiences after she had gone through auditory integration therapy (AIT).

"My defensive actions against affection became changed into a kind of still acceptance. In the course of time something very odd happened, because a year later I found out that, if I made some kind of threatening move at my mother and she hugged me, I asserted the latent feeling of exasperated affection, and was able to contain my swinging hand before it made contact" (p.264).

While the shared sensory experiences vary greatly for each person with autism, through listening to personal experiences we can avoid making assumptions about what we so often call behavior; we can move toward understanding the sensory experiences and movement that appear so awkward and out of control to those of us who have easy control over our movements.

Written, Spoken and Typed Language

Since the beginning of the use of facilitated communication, questions about how the FC user experiences, receives, and produces language have been persistent and prominent. Throughout this book, Lucy describes what has been supportive to her increased ability to use reliable typed language. Lucy describes her frustrating experiences with receptive language:

"Someone would release some spoken sound in my direction, but unless I already knew what they were trying to say, I floundered because only part of the speaker's intended package got through" (p.36).

expressive language:

"The language that I developed internally could not get past the barrier of what speech I did have. I did not understand that the words I did produce were unintelligible to others. I thought that I was sounding as they did but of course I was not" (p. 42).

and her very different experiences with language after she began to use facilitated communication:

"A person who had never used language in an effective way as a child in the way that my nieces were learning to do, has not had this catalyst for the process of becoming an interactive human being nor for the organizing how he experienced the world in terms that could be communicated to someone else" (p.200).

The danger that people with autism, who are non-verbal, (produce echoed and repetitive speech), have faced are assumptions of incompetence, based on judgments about lack of speech and bizarre movements. For example, a person's inability to make eye contact, perform simple tasks, and respond to questions often leads to assumptions about the person's intellectual complexity. Through Lucy's reflections we see that this lack of performace is due to difficulty in motor planning and regulation, not lack of complex thought. We begin to understand that people with autism may experience sensory input, motor planning, or language processing in ways very different from someone who does not have autism. Lucy's book pushes us to remember that this difference in performance is not equated with mental retardation; rather it reflects complex differences in how a person with autism, such as Lucy, experiences the world. Ann Donnellan writes, "typically we have assumed that a lack of performance equals a lack of knowledge." With an understanding of the sensory and movement experiences that Lucy describes in her book we can guard against such damaging interpretations of unusual behavior.

Others' perceptions and perceptions of the self:

A unique addition to Lucy's Story is the opportunity to hear the experiences of her family members throughout the text. These experiences are often related to shifting perceptions of the person who uses a new way to communicate. In this case Lucy's sister is reflecting on how she had to work to change her perception of her sister, who once was described as mentally retarded. Lucy's sister reflects:

"I was so used to perceiving Lucy as this retarded person, and, all of a sudden, I had to change my whole viewpoint of her, and accept that she is more intelligent that I am. I had to come to terms with that, and with the questions that other people asked me, 'how is it that she can be so intelligent, and yet do all these strange things?' (p.106)."

In addition to Lucy's family members working to change how they spoke about and acted toward Lucy, Lucy herself had to deal with the many changes that she encountered being a person who was now able to communicate reliably. After Lucy began to type she said:

"Overall I remained frustrated, upset and confused. I had assumed that if I were ever able to express myself in real language, my life would immediately be transformed. Fat hope! At Special School I was stuck in the mire. However I thought I knew how to escape" (p.102).

Even with such a valuable new tool such as communication people who do not speak in typical ways and who move and look differently continue to struggle to be taken seriously. Finding a communication system that works for an individual can bring monumental changes but still, to experience freedom and opportunity it is the culture that needs to change.

Learning to facilitate:

Many people who loved and cared for Lucy as a non-verbal child were forced to rely on their knowledge of Lucy obtained through close relationship and past experiences in making decisions about how to support Lucy in school and other environments. As Lucy began to type she gained the ability to tell people what supported her not only in typing but also in many other situations. Lucy shares:

"I was learning to help other people to enable me to stumble around the keyboard so that I could use my underdeveloped internal language in a way I thought speech and writing were used by everyone else" (p.94).

Lucy continues by saying:

"I see now that people who worked with me successfully were those who developed a real skill in monitoring and controlling their own interactions. This allowed me to get excited enough by their interest to create some kind of language, without giving me any cues to act as I thought the other person expected me to" (p.97)"

Without the insights and collaborative sharing that can happen through mutual communication, family, friends, and care givers are left to guess about supports and how a person with a disability experiences what non-autistic people may perceive as help. These insights into how a person experiences facilitation and autism in general can lead to successful participation in many situations.

Changes in Lucy's Life

Upon learning to type Lucy's life changed dramatically. She left segregated education, entered high school and eventually the university. Of interest, were Lucy's thoughts about how her sensory, physical and emotional responses changed.

Lucy writes:

"Also I was reacting better because I was trying to live up to these peoples perception that I was an intelligent person. However there was something rather more deep-seated going on. I now realize that the physical and sensory changes were partly due to the feedback that my hand was sending to my brain as I moved to make sensible language for the first time in my life. The months between my first bringing that Canon home and our trip to Sydney had seen massive changes in how I felt my body move in space. I still rocked, flapped and ran, and would continue to do so for some years. However in some strange way my use of language was making me more of a person, with better feedback as to why weird movements did not bring the results that other people achieved in their activities when they moved their heads, hands and feet" (p,114). "Up to the time I started typing, I had made outings pretty impossible.Typing had changed all that. It was obvious I understood the dialogue, in spite of appearing inattentive and restless. I therefore could start to learn to keep myself in control, not only for its own sake as in behavior modification, but because I wanted to go to interesting movies, plays other children's pantomimes and to adult places like restaurants, which could not do if I disturbed everyone else" (p.114).

How people experience autism remains a complex and poorly understood phenomenon. Only through authors such as Donna Williams, Temple Grandin, and Sue Rubin have non-autistic people recently begun to understand the perspective and vastly different experiences of people with autism. This new perspective Lucy offers brings new important and interesting information about the experience of autism.

Throughout the many experiences that Lucy shares she brings out the complexity of participation, inclusion and identity for herself as a person who is autistic. She too "moves us away from the usual, dominant discussion of a purely essentialist argument of the non-speaking person trapped in a disabled body" (Rubin et all, 2000). Through her work we see the complexity of her participation when says, "no one understands how my mind works" (p.117.) and further, her quest for meaningful citizenship. She shares, "Jay made an important decision.She believed I must achieve what I saw was important, which was doing age-appropriate school work without being disadvantaged by the side effects of my autism.I was the boss" (p.109).

Reading Lucy's Story allows readers to challenge their perceptions about disability, remember that these stories are key to the challenge to work toward justice for people with disabilities, and in this case most resoundingly revisit the right to communicate. In Lucy's Story we learn of liberation through communication, Lucy's determination, the devotion of a parent, the support of the many facilitators and care workers, friends and family. We are richer for sharing in the experience of Lucy's Story.

What's Normal?

By Lucy Blackman

Will you feel a person is normal if they show no initiative and if there is nothing special about them that makes them act differently from others Or do you revel in the differences that make life interesting.

I feel that the thinking which makes us human is our differences from one another. Perhaps though you belong to that group of people who would have us all the same. Just remember that this is what Hitler tried to do. He was the cause of great suffering and death of many. Because he did not like differences in people. Is this the world we want to live in? Surely our idea of normal should include a wide range of variations in all aspects of life (p.129).

References

Donnellan, A.M., & Leary, M.R. (1995). Movement differences and diversity in autism/mental retardation: Appreciating and accommodating people with communication and behavioral challenges. Madison, WI: DRI Press.
Ferguson, P. M., Ferguson, D. L., & Taylor, S. J. (1992). Interpreting disability: A qualitative reader. New York: Teachers College Press.
Grandin, T., & Scariano, M.N. (1986). Emergence: Labeled autistic. Novato, CA: Arena Press.
Rubin, S., Biklen, D., Kasa-Hendrickson, C., Kluth, P., Cardinal, D., Broderick, A. (2001). Independence, Participation, and the Meaning of Intellectual Ability. Disability and Society, 16(3),
Williams, D. (1996). Autism: An inside-out approach. London: Jessica Kingsley.