Communication, Control and Choice

By Bob Williams

Anne McDonald was bom in Victoria, Australia in 1961. By age three, she was found to have severe cerebral palsy and assumed to have profound mental retardation as well. Shortly after her diagnosis she was placed in St. Nicholas Hospital in Melbourne. Afler languishing on a back ward there for the next 15 years, Anne summed up the brutal reality of her life and that of far too many other of her contemporaries in this way:
"To be imprisoned in one's own body is drcadful. To be confined to an institution for the profoundly retardcd does not crush you in the same way. It just removes all hope." (Crossley and McDonald, 1980.)
In the words and deeds of Anne McDonald and others with severe disabil-ities worldwide, we can hear the makings of a clarion call if we choose to listen. It is a clarion call to action similar to one issued nearly a decade ago. In 1979, the Centeron Human Policy helped stir many of us to action by calling for a universal community imperative. Ten years later, the typical life experiences of people labelled severely or profoundly disabled demands that we take yet another step closer to true community.

One way we can do this is by issuing a communication imperative which affirms and asserts that: Every person regardless of the severity of their disabilities, has the right and the ability to communicate with others, express every day preferences and exercise at least some control over his or her daily life. Each individual, therefore, should be given the chance, training, technology, respect and encouragement to do so.

Working toward the widespread acceptance and application of this imperative is essential. lt can help to focus vitally needed attention and resources on what we can do to enable individuals with even the most severe disabilities to begin to conquer and replace:

  • hopelessness with hope;
  • boredom with curiousity;
  • learned helplessness with learned initiative;
  • superimposed passivity with turn-and risk-taking;
  • speechlessness with meaningful expression;
  • confusion, anger and resentment with choice;
  • and, darkness at the end of the tunnel with light.

    We owe a tremendous debt to, among others, Ed Roberts, Doug Guess, Anne Donnellan, Anne McDonald, Mayer Shevin, Luanna Meyer, John O'Brien and Judith Snow. For thanks to their bold efforts, we have learned that one of the best ways to empower people with severe disabilities in the community is to encourage them to make choices and communicate more throughout their daily lives.

    But we can never be satisfied with what we already know about the powers of the Four Cs-Choice, Communication, Community and Control-in the lives of people with severe disabilides. Rather, we must constantly be pushing back the outermost boundaries of our knowledge in these four vital areas. In order to do this effectively, we must at least take the following steps:

    1. We must recognize that people with severe disabilities, like all others, have personal preferences, likes and dislikes which they can learn to express through a variety of effective means (Shevin and Klein, 1984).

    2. We must realize too, however, that the everyday preferences of individuals with severe disabilities are often ignored because these expressions are viewed by others as "aberrant," "offtask" "noncomplaint," "inappropriate," "excessive," "challenging," "aggressive," "self-injurious" or "nonsensical" and rarely as attempts to communicate valid wants, needs, fears, wishes or desires to others.

    Houghton and her colleagues have found that typically "classroom staff respond at extremely low rates to students' expressions of choice or preference." (Houghton, Bronicki and Guess, 1987.) The study showed that staff responded to students' expressions of preference or choice only 15 percent of the time during structured activities and, about 7 percent of the time during unstructured activities. On the positive side, however, when students were asked to express a preference or choice, they did so 99 percent of the time (Houghton, Bronicki and Guess, 1987).

    3. The Houghton study points up the need to readily identify and begin to redress the barriers faced by persons with severe multiple disabilities to increasing their everyday communication and choice-making. These barriers include being seen as: too "low funtioning" to communicate likes or dislikes; unsure what a "choice" is since no importance was ever placed on likes or dislikes; improperly positioned; only able to say five words or less; unable to read or write; unwilling to try to communicate since no one listens anyhow and dependent on unpredictable body movements to convey your every need, want, fear or desire.

    4. In addition to recognizing and actively redressing these barriers, it is equally essential to recognize that choices and preferences can be expressed in a variety of ways, including: pointing; smiling or using other facial expressions; gesturing; signing; using a picture board; eye gazing; selecting one kind of food over another, nodding or shaking one's head to indicate yes or no; tuning in a favorite radio or TV station; wearing favorite clothes; sleeping in as late as one can or doing one's best at what one enjoys.

    In fact, often a person's ability to express a preference or choice is most limited by others' unwillingness or inability to pick up on what the individual is saying and how he is saying it.

    5. Encouraging each individual to express as many every day preferences as possible truly is imperative. This can be done by encouraging the person to decide: when to get up on weekends and holidays; when to go to bed; whether to shower before bed or in the morning; who will help him/her eat, bathe, dress, etc.; what to wear, what to eat; what to do with free time and who to do it with and when it is time for a coffee break.

    6. Allow yourself to be guided by these expressions of preferences as much as possible. This helps the person make the connection between having likes and dislikes and making actual choices in life. Frequent practice in turn-taking has shown promise as an effective elixir in allowing some undividuals to compensate for their severe intellectual impairments and overwhelming sense of learned helplessness and "superimposed" passivity (McDonald and Gillette, 1986). If necessary, structure also can be added by:

  • Limiting the person's choices to one of two distinct options first;
  • Presenting a set of real choices to the individual;
  • Presenting the individual with a set of choices either of which would be acceptable
    and age-appropriate for him/her to make(Shevin and Klein, 1984);

    7. Demand that assistive technology be liberating for people with severe disabilities. Never make such individuals slaves to devices which are ill-suited to meet their unique needs and abilities. Avoid dependence on high tech systems which tend to be too costly, large and bulky, impersonal and sophisticated to make for natural communication.

    8. Concentrate on identifying, strengthening and building upon an individual's existing communication and choice-making skills. The time for expanding choice, communication and control in the lives of all people with severe disabilities is now. As Anne McDonald has pointed out:
    "Unless someone makes a jump by going outside a person's previous stage of communication, there is no way the speechless person can do so. Failure is no crime. Failure to give someone the benefit of the doubt is"

    References
    Centcr on Human Policy (1979). Thc Community Imperative. Syracuse, New York.

    Crosslcy, R. and McDonald, A. (1980). Annie's Coming Out. NewYork: Penguin.

    Houghton, J. Bronicki, B. and Guess, D. (1987). "Opportunities to exprcss preferences and make choices among students with severe disabilitics in classroom scttings." The Journal of thc Association for Persons with Severe Handicaps. VoL 12 (1), pp. 8-27.

    McDonald, J. and Gillette, Y. (1986). "Communicating with persons wilh severe handicaps: Roles of parents and professionals." The Journal of thc Association for Perons with Severe Handicaps. VoL 11(4), pp 255-65.

    Shevin, M. and Klein, N. (1984). "The Importance of Choice-Making Skills for Students with Severe Disabilities." The Journal of thc Association for Perons with Severe Handicaps. VoL 9(3), pp 159-166.

    With permission from: ÒEveryone CommunicatesÓ A Cirriculum and Resource Guide to Aid Development of Expressive Communication and Communication Interaction Skills. Ann Heler, Author and Collector of Resources, Wayne County Intermediate School District, 2nd edition 1989.
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