Medical Treatment, Education, and Support
New light on the "validity" debate
In the ever-increasing variety of assistance organized by and for people with disabilities, three overarching categories can be readily discerned. They are very different categories involving very different goals, power relations, and evaluations. Yet as debates swirl over the issue of "best practices" and the very validity of certain kinds of assistance is called into question, it becomes apparent that public dialogue is muddied by the confusion of these categories. This investigation offers a framework for thinking about the coherence of our practices and the incoherence of the ways we try to judge them.
A socially revered and influential model for assistance is MEDICAL TREATMENT. In the medical mode, power is in the hands of the doctor or other health care practitioner. The goal is not to pass this power along: while extensive time spent as a student may qualify one to be a teacher, extensive time spent as a patient does not qualify one to be a doctor. In the relationship of individual to environment, the object is NORMALIZATION: the individual shall BE adapted to the social and physical environment by being restored or changed in the direction of what is considered normal.
The most ubiquitous type of assistance offered is EDUCATION (a.k.a. training or coaching). In the education mode, power is initially in the hands of the teacher/trainer/coach, but the ultimate goal of education is SELF-DIRECTION, sometimes expressed as "learning how to learn." The teacher is expected to pass power and control to the learner with all due speed, but no undue haste. In terms of the overall relationship of individual and environment, education intends that the individual shall be better able to initiate and direct adaptations to his/her social and physical environment.
The third mode is that of SUPPORT, in which power to choose and direct the provision of services belongs entirely to the person being supported. Support aims not at "fixing" or changing the individual, but at assuring EQUAL ACCESS, a goal sometimes described as a level playing field or simply as an everyday life. This access refers not only to the resolution of physical barriers, but to the resolution of attitudinal barriers as well. In a support mode, the environment (including people) should be better able to initiate and direct adaptations to the individual.
Interventions in the MEDICAL MODE run the gamut from antibiotics to chemotherapy, appendectomies to heart transplants. These medical interventions should not be open- ended: some measurable results should be evident fairly promptly or the treatment should cease, or not be repeated. Subjective evaluations in terms of enhanced appreciation of life, ability to cope, and so forth, although accepted as sufficient proof of value in the education mode, cannot stand alone as proof of medical worth because they may be due to placebo effects or nonmedical factors. Medical practitioners are expected to report objectively via controlled studies using standard scientific method and subject to verification by peer review. Obvious drawbacks to the medical mode are the physical and/or financial pain of treatment, as well as the factor of physical risk should treatments go awry.
Measured against the above criteria, it soon becomes clear that many approaches labeled "therapy" rightly belong in the EDUCATION MODE: they aim to help the individual become self- actualizing, making better adaptations to the environment. Education approaches such as modern schooling and vocational (re)habilitation tend to be long- term and open-ended, since comprehensive achievements cannot be held to a timetable. The flexible length of time allowed for the achievement of results can be a positive attribute, but where achievement of results ("readiness") is made a prerequisite for obtaining basic rights and needs it becomes a drawback. In the education mode, evaluation tends to be a mix -- sometimes an uneasy mix -- of the subjective and the objective: evaluations in terms of "enhanced appreciation of life" or "improved self-esteem" mingle with standardized testing results and job placement statistics.
The SUPPORT MODE includes a wide range of possibilities such as ADA requirements, assistive technology, facilitated communication, and attendant care. It also includes many folk healing methods from traditional societies, which aim not at medical treatment as we know it but at rallying the community to focus attention on a member in need. The much-used term "positive approaches" refers to supports, the most universal of which is simply friendship.
Once we have these three basic distinctions in mind, it is easy to see where perversion of the logic of a particular category has caused many false claims and misunderstandings. It is also clear that "jumping" among the categories (i.e. mixing the evaluation criteria of one mode with the goal or power relations of another) should run up a red flag concerning the validity of the claims being made. Several recent debates can serve as illustrations.
The widespread practice and methods of FACILITATED COMMUNICATION have come under heavy attack during the past year. The first major volley, which quickly achieved status as a classic among FC opponents, was the study, "An Empirical Assessment of Facilitated Communication," by Douglas L. Wheeler et al. (Mental Retardation, Vol. 31, No. 1, 1993). The report begins, "A treatment that is growing in importance and proliferating rapidly is facilitated communication...."(emphasis added), thus locating this evaluation squarely within the medical mode. The researchers, assuming a position of power appropriate to the medical mode, proceeded on the assumption that their experimental subjects could and would produce communication on demand in a standard scientific testing situation. Elements of the education mode also entered the picture as the experimenters asked, not for any communication their subjects might wish to share, but for what they judged to be correct answers to a problematic and limited range of questions they decided to pose.
Lost in this controlled (and here that word takes on particular significance) experiment was the simple fact that facilitation is a support. It can only be chosen and directed by the person being supported and, while specific information given through facilitation is open to verification when necessary (as are anyone's words), the support itself can only be evaluated by whether it enhances the life and the human relationships of the person being supported. A corollary to these observations may help explain the difficulties which some would-be facilitators encounter: facilitation must not be employed as if it were basically a teaching technique. The person being facilitated must be the one in charge, and must be free to take the conversational relationship anywhere...or nowhere.
Another recent example of category confusion has occurred in the debate over SCHOOL INCLUSION. Here the defining report is "Full inclusion of students with autism in general education settings: values versus science," by Richard L. Simpson and Gary M. Sasso (Focus on Autistic Behavior, Vol. 7, No. 3, August 1992). Simpson and Sasso argue that inclusion has not yet been subjected to "empirically validated procedures" and therefore it would be an irresponsible policy to implement. Here again, a support issue is viewed through the lens of the medical mode and found wanting. One wonders what scientific variables will be used to weigh and measure the value of belonging and the enrichment of full participation. Insofar as inclusion involves human rights, one also wonders where the Civil Rights movement, or even the "self-evident truths" of the Declaration of Independence, would be if their implementation had to await the verdict of Sasso and Simpson's data charts.
AUDITORY TRAINING, consisting of 10 hours of randomly-selected music played at varying frequencies through headphones, provides another illustration of category-jumping. While originally billed as a medical treatment, since it aimed to correct sound sensitivities by fixing the mechanisms of the ear, questions arose when the only reported study found no discernable effect on the ear (as measured by audiograms). While keeping its medical goal intact, Auditory Training then invoked explanations from the education mode: it claimed to be teaching people how to listen or tune in. By invoking educational value, it also became possible to widen the pool of potential patients/ trainees to those who had no measurable hearing difficulties (e.g. those with Fragile X Syndrome, depression, dyslexia).
Retailers of auditory training machines became even more eager to reposition their claims as educational when the FDA banned further imports of this equipment on the grounds that they were being marketed as medical devices without the proper testing and data to prove safety and efficacy.
However, unlike the dynamics of the true education mode, the recipient's role remains passive and the practitioner's role is to set the music machine rather than to actively direct the patient/trainee. It has been suggested that for people with autism, the hallmark of which is random sensory experiences, adding a few more random sensory experiences is unlikely to have educational value.
BEHAVIOR MODIFICATION offers one final and useful example of the confusion which results from the perversion of a category. Classic behavior mod aims simply at increasing or decreasing a behavior via rewards or consequences, so that an action by the trainer receives a predictable response from the trainee. It is not concerned with establishing two- way communication around the behavior, or with building a dynamic relationship between trainer and trainee.
Although often billed as education for people with autism and related disorders, behavior mod is not a route to the education goal of self- directed adaptations. The education billing is strategic, however, since it allows a behavior mod program to run open-endedly and to continue even when there are no discernible positive results -- often for a period of time which stretches into a child's entire school career. Considered in the category of medical treatment, its true nature and limitations might be more readily apparent.
It is long past time to break through our stalled debates over which practices are truly promising and which are dead ends. We can begin by clarifying the goals of these practices, be they medical, educational, or support, by questioning the circumstances under which each has been deemed appropriate, and by assuring that our criteria for judging validity and success are, in fact, valid themselves.