Why Are Painful Procedures Used With People with Disabilities?Why Are Painful Procedures Used With People with Disabilities?
People with mental retardation and other disabilities comprise some of the most devalued members of our population. If the general public was made aware of the atrocities described above and were told that these abuses were being imposed upon the elderly, prisoners, non-disabled school children, or even animals, they would be horrified. But when told they are being used for the benefit of individuals with disabilities, many people are willing to accept this and to ignore the abuse. In one study, college students were found to view as acceptable a wider range of aversive procedures when the recipients were described as having more severe levels of mental retardation.
People with mental retardation are often viewed as "perpetual children". This view provides a rationale for going to extremes to control every aspect of their lives, including their behavior. People with mental retardation, throughout history, have been subject to policies and treatment that reflect the degree to which they are devalued. Such practices have included segregation in institutions, exclusion from community life, compulsory sterilization, the withholding of treatment for treatable medical conditions, prohibitions against voting and marriage, and exclusion from, or segregation in, education. Although these policies are changing, there continues to be a propensity to use more aversive procedures with individuals who have more severe disabilities.
Over 50,000 people with mental retardation continue to reside in large, impersonal, overcrowded institutions in the United States. There we "permit them only limited social relationships, deprive them of freedom of movement and of opportunities for decision making, and forbid them most of the amenities they could enjoy outside". All people, including those with labels of severe and profound mental retardation, have fewer behavior problems when they are able to make choices, have impact on their environment, feel valued and empowered, be productive, enjoy basic freedoms and have access to a range of meaningful activities.
It is a sad paradox that the individuals with the most severe disabilities are the most likely to be placed in environments that produce the types of behaviors for which aversive procedures are used. In other words, the more individuals dislike living in large, congregate settings and having every aspect of their lives controlled, and the more they attempt to protest against such treatment, the more likely it is that their behavior will be interpreted as an expression of the continued need for more structure and control and the less likely it is that their protest will be heard.
"Persons with disabling conditions, especially those with severe/profound mental retardation, comprise the minority group in America that has experienced the most systematic and long term application of aversive procedures to modify behavior perceived as deviant". One of the reasons this has been able to occur is the degree to which the public and professionals are able to separate themselves from both the people served and the procedures used.
It is perhaps psychologically necessary for the scores of people implementing aversive methods to view the people who are the recipients of these procedures as very different from themselves. The staff who implement these procedures are professionals or young people just starting out toward professional careers. Unlike other disabilities, such as blindness, traumatic brain injury, or physical disabilities requiring the use of a wheelchair, neither mental retardation nor autism can be acquired in adulthood. This is perhaps one reason that many people have difficulty putting themselves in the place of an individual with mental retardation.
Staff who work in settings in which these techniques are used often convince themselves that such interventions are necessary to free individuals with severe behavior problems from their disabling conditions. When this author conducted interviews with staff who implemented aversive techniques, a prevailing sentiment was that the need for these procedures was unfortunate but their use was necessary due to the severity of the behavior problems exhibited by the people they served.
It may also be important to staff for them to describe aversive procedures in clinical, detached terms. This depersonalization has a cyclic effect. Such perceptions encourage the continued implementation of demeaning procedures, which in turn results in the further devaluation of the victims of such methods. We compromise the public's perception of all people with disabilities when our treatment implies that these are dangerous, unpredictable people whose extraordinary behaviors need to be controlled through extraordinary means.
The choice of terms with which the professional community describes these procedures is an indicator of this depersonalization. One author discusses this tendency to use language that "whitewashes" the truth: "The language of behavior modification is ideally suited... for detracting the public, the legislature, the judiciary, and perhaps, occasionally, the inmates. But most of all, the language of behavior modification is marvelously suited to soothe the consciences of institutional administrators".
The chart below lists common terminology for aversive procedures and a description of what the procedure entails:
Commonly Used Term Description of Procedure
Finger and Thumb Pressure Pinching
Oral Hygiene Therapy Brushing teeth, and wiping lips and face with an antiseptic
Aroma Therapy Ammonia fumes to the nose
Taste Therapy Lemon juice, hot pepper, or vinegar to the tongue
Exercise Therapy Forced exercise, for example, forced stair walking wearing heavy arm and leg weights
Faradic Stimulation Electric shock
Required Relaxation Holding someone down on the floor until he or she stops struggling
Safety Coat A full body suit used to physically restrain an individual
The unspeakable abuses that are inflicted upon children and adults with disabilities are all the more dangerous when we allow them to be couched under terms like "treatment" and "therapy". In so doing, we convince ourselves that these are necessary, even restorative practices.
The excerpts below, from professional publications, exemplify the tendency to depersonalize the people receiving these procedures as well as the procedures themselves.
The subject reacted violently to the ammonia, turning her head and struggling with the experimenter, although the capsule could be brought to within a few inches of her nose immediately following a slap or antecedent behavior, largely because the subject did not leave her chair.
The subject showed an intense reaction when both the lemon juice and the vinegar were delivered and his reactions were as much a deterrent to on-task behavior during training sessions as his self-stimulation. His reactions consisted of trunk-twisting, arm flapping, and leg extension as well as grimacing, spitting, coughing, screaming, and crying.
There is no discussion of these reactions being normal. No compassion is shown for the suffering caused the people receiving these "treatments". In fact referring to them as "subjects" may assist the individual performing the study to detach him/herself from the pain being induced. Perception of individuals in this depersonalized manner negates the possibility of understanding them as participating, valued, feeling members of our society.