This paper describes abuses against children and adults with mental retardation and other disabilities that occur daily in hospitals, institutions, nursing homes, group homes, and in our communities. Many individuals with disabilities are victim to what is termed "aversive therapy" to control their behavior. All aversive techniques have in common the application of physically or emotionally painful stimuli. These techniques, when applied to people with disabilities, are used not only to control dangerous behaviors, but also to modify behaviors that are simply idiosyncratic, unusual or viewed as annoying. A wide range of non-aversive interventions is available. Positive approaches attempt to understand the individuals purpose in behaving as he or she does and offer the person positive alternatives. These interventions are at least as effective in changing the behavior of persons with disabilities and do not inflict pain on, or dehumanize, them.

People with mental retardation and other disabilities make up one of the most devalued segments of the population. Abuses are imposed on them which would not be tolerated if they were applied to the elderly, school children, prisoners, or even animals. This paper calls on Amnesty International to publicize the cause of this vulnerable population and to take action against these continued abuses.

Amnesty International has defined torture as "the systematic and deliberate infliction of acute pain in any form by one person on another or on a third person in order to accomplish the purpose of the former against the will of the latter". This paper calls attention to the use of techniques that inflict pain for the purpose of changing the behavior of one of our most vulnerable populations, children and adults with mental retardation and other developmental disabilities. Consider the following examples. Each of these is an example of actions taken in response to an approved behavior program.

The young man made a low grunting noise under his breath as he sat at his work carrel sorting objects. His attendant was behind him almost immediately. "NO INAPPROPRIATE NOISES" the attendant shouted. At the same time he grasped the young man's head, tipping it back so that he could insert into his nose the pointed tip of a plastic squeeze bottle into which he had just broken an ammonia capsule.

Several hours later this same young man stole a glance at the visitors who were there to observe him. "EYES ON WORK", came the shout. The young man raised his arms, eyes blinking, as if in surrender, as the attendant grabbed the pressurized water hose. He was sprayed in the face for several minutes until he was sputtering and his shirt was soaked. Then, with the helpless look of one resigned to the bleakness of his situation, he returned to the task in front of him, not even pausing to wipe the water from his eyes.

When Linda refused to get out of bed, she was sprayed in the face with water every five minutes. If, during the day she left her classroom, she would be restrained by two attendants, using hand restraints behind her back. She was then forced to inhale ammonia fumes for five seconds. If Linda held her breath, she was tickled to assure that the ammonia fumes were inhaled.

In 1989, a court approved the use of an electric shock helmet for a young man for the exhibition of the following behaviors: head shaking, breaking objects, applying pressure to his collarbone, getting out of his seat, getting out of bed, walking or running away from the group, blinking his eyes rapidly, holding his head to his shoulder, leg shaking, and clicking his teeth.

The above are examples of a phenomenon that affects hundreds of individuals in the United States daily. Individuals who have mental retardation or other disabilities have become the victims of aversive techniques. Although it is widely believed that such procedures are necessary to control dangerous or disruptive behaviors, professionals now acknowledge that a wide range of positive interventions are available which are at least as effective in managing dangerous behaviors, and which do not inflict pain on, or dehumanize the individual with disabilities.

The Problem

It is estimated that there are nearly 4 million individuals with developmental disabilities in the United States. The largest percentage of these individuals have mental retardation. Other diagnoses grouped under this category include autism, cerebral palsy, and epilepsy. A study in 1988 estimated that 160,000 individuals with developmental disabilities exhibit a significant degree of destructive behavior. "Destructive behavior" is defined as the exhibition of those behaviors that, due to their intensity or frequency, present a danger to the individual exhibiting the behavior, to other people, or to property. One approach to controlling these and other behaviors has been to use what is called "aversive therapy". Aversive interventions use painful stimuli in response to behaviors that are deemed unacceptable. Aversive procedures are often used as part of a systematic program for decreasing certain behaviors. These procedures have some or all of the following characteristics:

§ Obvious signs of physical pain experienced by the individual.

§ Potential or actual physical side-effects, including tissue damage, physical illness, severe stress, and/or death.

§ Dehumanization of the individual, through means such as social degradation, social isolation, verbal abuse, techniques inappropriate for the individual's age, and treatment out of proportion to the target behavior.

Throughout history the approach to the management of difficult behaviors has been one of "treat the symptom and ignore the disease". That is, the behavior itself was viewed as the problem. Better approaches include a process for identifying underlying causes for the behavior. Leaders in the field of developmental disabilities now know that even the most dangerous behaviors can be changed without using aversive procedures. This can be accomplished when the people supporting the individual are able to determine the purpose or cause of the behavior. They then can teach new behaviors or provide alternate means for accomplishing the needs that the person is attempting to communicate. As one author states, "Ethically suspect is the notion that it is permissible to attempt to control someone's challenging behaviors through aversives when serious attempts are not being made to understand and address the causes that may be giving rise to those behaviors in the first place".

Many people with mental retardation lead lives of almost total control from cradle to grave. Even such simple daily decisions such as when to wake up, whether to take a bath or shower, what to wear, and when or what to eat are often made for them. Decisions are made with regard to where and with whom people will live, and the manner in which they will spend their days. All people with disabilities have the ability to make and express choices, although it may take a patient and skilled person to elicit and interpret such expressions. It should not be surprising that any individual would respond in frustration, at best, to the lack of opportunity to make major and minor life choices.

It is proposed that behaviors previously viewed as destructive or troublesome are likely to be the person's attempt to have impact on his or her environment. People with disabilities who have what are thought of as behavior problems, perhaps should be viewed as objective critics of society's approach to serving them. Their behaviors, rather than being viewed as maladaptive, should be interpreted as highly adaptive responses to a maladaptive environment.

The application of pain has been considered by some to be a necessary means to control dangerous behaviors. As can be seen from the examples above, however, painful or aversive procedures are not only applied to dangerous behaviors, but are frequently applied in an effort to force an individual to conform to arbitrary norms, to be more compliant or to appear more "normal". The director of one residential school for children with disabilities, was asked under what circumstances he would approve the use of aversive procedures. He described his criterion as "any behavior that would not be appropriate in a restaurant". Using this criterion, behaviors such as rocking, biting one's nails, twisting one's hair, stuttering or moaning are punished with water spray, jalapeno pepper to the tongue, spanking, pinching, or electric shock at this school.

What Procedures Are Used?

The types of aversive procedures reported in the literature as used on persons with disabilities include, but are not limited to:

§ Electric shock

§ White noise at 95 decibels

§ Forced exercise

§ Shaving cream in the mouth

§ Lemon juice, vinegar, or jalapeno pepper in the mouth

§ Water spray to the face

§ Placement in bathtub of cold water

§ Slapping or pinching

§ Pulling the hair

§ Ammonia capsule to the nose

§ Blindfolding

§ Placement in a dark, isolated box

§ Ice to the cheeks or chin

§ Teeth brushed or face washed with antiseptic solutions

§ Prolonged physical restraint or isolation

§ Withholding of meals

No solid evidence exists which would tell us how widely aversive procedures are used, but studies reporting the use of such procedures continue to be published. The published research is probably not representative of the range and intensity of the aversive procedures being used. It is known, for example, that some of the facilities most notorious for their use of these techniques do not publish their findings. Although it is generally believed that aversive procedures are most frequently used in institutional and private educational settings, there continues to be widespread use of these techniques in public education and community based settings throughout the country.

Aversive procedures are not used universally. In fact, some states and countries have outlawed their use. Some federal and state regulations attempt to limit the use of aversive procedures, often by requiring that non-aversive techniques be tried before aversive techniques are used. This approach to protecting the rights of individuals with disabilities is insufficient. Often a poorly designed or overly simplified non-aversive approach is tried for a few days before it is dismissed and aversive techniques substituted.

When aversive techniques are available as an option it can be predicted that less effort will be expended in trying to understand the functions of the behaviors and in addressing problems proactively. Good behavioral programming focuses on assisting the individual to avoid the need for demonstration of the behavior rather than focusing on what to do after the behavior occurs.

Electric shock in a variety of forms is being used with increasing frequency as technological advances allow for quicker and more convenient response to behavior. The use of electric shock most often entails the presentation of an electrical charge immediately following the behavior through two electrodes placed on the individual's fingers, forearms, legs, or feet. A second means of delivering contingent shock is by way of a hand held shock stick. In one study, this hand held device is described as a stick with "two protruding electrodes at its end. The shock stick (more commonly known as a cattle prod) delivers a peak shock of 1400 volts at .4 milliamperes".

A more recent invention, an automatic shock helmet known as SIBIS (Self-Injurious Behavior Inhibiting System) has caused considerable controversy. The helmet is designed to sense when the wearer bangs or hits his/her head and deliver an electric shock to the individual's arm or leg. As described in one of the introductory examples, it can also be triggered remotely and is being approved and used for non-dangerous behaviors such as rapid eye blinking, jiggling one's leg or getting out of one's seat.

Approving the use of such devices opens up a Pandora's box. Recently a "working group" was convened by a residential school. The group was formed in response to a state court's concerns regarding the use of electric shock to control behavior. This group, convened by the courts to investigate limiting the use of shock, instead recommended that a new device be developed that would be similar to the SIBIS helmet but that would increase the average milliamperage of the shock that is delivered from its current level of 1.5mA. to levels as high as 47.5mA. This group has since contracted with an electrical engineer to develop such a device. It was also recommended by the working group that the placement of electrodes on areas of the body other than the arms and legs be explored.

Often, two or more aversive techniques are used in combination. At one residential school a student's behavior plan read as follows:

When Roy becomes person or object aggressive he is to be placed in arm restraints and seated. Staff are to ask, "Roy, your behavior is irresponsible. Are you ready to accept responsibility for your behavior?" If Roy responds "yes," he is to be forced to inhale ammonia for three seconds, sprayed with water for thirty seconds, and again forced to inhale ammonia for three seconds. Roy is then to thank staff for their help. If Roy responds negatively and does not accept responsibility for his behavior, staff are to repeat the ammonia, water spray, ammonia sequence. If, asked again to accept responsibility for his behavior, he again refuses, the aversive sequence is to be repeated twice in succession.

At another residential school children and young adults who are "non-compliant" (don't do as they are told) are forced to wear a visual screening helmet. The helmet blocks any light and emits loud white noise. In addition, a pressurized water hose attached to the front of the helmet sprays water in the wearer's face. The children wearing this helmet are either strapped face down on a board or are forced into a kneeling position with their legs strapped down behind them and their arms strapped to a low bench in front of them. They are left wearing the helmet, and physically restrained for a minimum of fifteen minutes and up to a half hour if the individual continues to struggle or to make noise. In July, 1985 a twenty-two year old student died while wearing the visual screening helmet.

At this facility, children, most of whom have autism, arrive at school in the early morning and do not return to their living units until 8 or 9 p.m. While at the school they sit in work carrels sorting objects, putting small objects into containers, or performing other "practice work". If the children stop working, make any noises or utterances other than speech, get out of their seats, take their eyes off their work, or fail to follow directions, they will receive an aversive procedure selected at random (water spray, visual screening helmet, time out in restraints, ammonia to the nose, pinching, spanking, or taste aversives).

A bizarre twist at this school is the use of "behavioral-rehearsal lessons". To provide adequate opportunities for the receipt of a punisher, staff urge the child to display the negative behavior. Several years ago, a team from the New York Office of Mental Retardation and Developmental Disabilities visited this school and found these instructions taped to a student's work station, "Kathy is to receive one stealing opportunity per hour. She should be prompted to steal a juice squirter and a spank is to be administered. If Kathy does actually steal the juice she is to receive the helmet and white noise for fifteen minutes". The instructions for another student who was being trained to "accept disappointment" read as follows: "Three times during the hour, when Eric earns juice or food for task completion or good working -- do not give the reward. Say, 'No reward this time, go back to work please.' Wait a few minutes and if Eric accepts the disappointment, reward him with a sip of juice. If Eric does not accept it, consequate the behavior displayed". The evaluation team from New York did not refer to this practice as "behavioral-rehearsal lessons". They called it "entrapment".

The following quotations about this school (and its sister facility in California) also are from the article by Ric Kahn that appeared in the Boston Phoenix.:

George Nazareth, former chairman of the Rhode Island Protection and Advocacy System spoke with former employees of BRI who told him that "they were under extreme pressure to put an end to each bizarre behavior in their students within two weeks. If a student hadn't responded as the deadline approached, the workers claimed they 'started pinching harder and harder to meet their goal'. Nazareth says the workers told him 'they were turning into monsters'". p.7.

Kathy Corwin, a former treatment worker at BRI, says that she saw Israel finger-pinching the bottoms of 12 year old Christopher Hirsh's feet. Israel was administering a behavioral-rehearsal lesson to get Hirsh to stop defecating on rugs and in the shower. Corwin said she heard the boy cry and scream in pain. The next morning a BRI worker named Nancy Thibeault got sick to her stomach when she saw Hirsh's feet. "There were open blisters and a reddish substance oozing from them," she testified. BRI workers continued to pinch the boy's feet. Corwin returned to work after two days off. She was horrified at what she found. "the insteps of both of Christopher's feet had a considerable amount of blisters and a considerable amount of open bloody patches where the skin had been entirely removed," she said. Soon after Christopher had received his "lessons" the boy's father took him to a doctor. It took three adults to hold him down. "He was absolutely terrified," a friend of the family who was there recalled, "There was no part of this skinny boy's body that didn't have a bruise. Then they took off his shoes. It was horrible". Christopher's father said the insteps of his son's feet "were covered with strange wounds that can only be described as holes. It looked as if the skin or flesh had been removed and that it was healing or growing back to the level of the skin". p.13.

The North Los Angeles County Regional Center, reviewed services at BRI in California. They said that "The real BRI is never seen by any outsider. Two weeks before official state or parent visits, aversives that caused bruises or marks were halted. p.13.

The California Attorney General's office filed accusations against BRI in administrative proceedings before an administrative law judge. The following are excerpts from that report:

On one occasion during the period September 3, to December 15, 1980 Matthew Israel, consultant for respondent (BRI of California) instructed Nicolas DeCila, a staff member, to grow his fingernails longer so he could give an effective pinch. Such pinches were administered with the fingernails and caused excessive and unnecessary cuts and bruises. p.17.

On or about March 1, 1981, Richard L. was restrained in a large black chair by himself in the kitchen. Richard's hands were tied to the chair, his feet were tied to the bottom of the chair, and a huge box covered his head and torso. He was kept in this position for at least one hour. p.17.

In or about February 1980, it was confirmed that Willie R. is a deaf child, and his parents so notified respondent. Respondent failed to modify Willie's program, and continued to inflict water squirts and corporal punishment upon Willie in contexts where it was unlikely if not impossible that Willie could understand the behavior he was required to exhibit to avoid punishment. For example, Willie received water squirts for not responding to verbal commands to keep his eyes closed while in bed. p.17.

On April 24, 1980 Willie R. was administered 77 spanks for hitting himself, 33 spanks for crying and 64 spanks for other behavior. In addition, Willie received 100 water squirts. p.17.

During the period September through December 1980 and for an unknown period of time before and after these months, respondent threatened to fire employees for not leaning hard enough on residents who were bent over to be spanked or for not giving an effective spank or pinch. p.17-21.

On occasion during the period from September through December 1980 and for an unknown period of time before and after that month, Richard L. was placed by himself while in restraints. Respondent fed Richard L. when he was in the yard by placing a plate of food on the ground with no eating utensils. Ricky would have to eat with his arms restrained to his sides. p.21.

When Carl was placed in isolation, respondent would not allow anyone to speak to Carl for 24 hours. He would be restrained in the classroom behind the boxes until 11 p.m., then he would be tied to a piece of furniture in the living room in a kneeling position to sleep. On these occasions he would be deprived of a bed, pillow, and blanket. p.21.

On occasion during the period from September through December 1980 and on unknown occasions before and after that period, respondent instructed his employees to administer pinches and spanks to the buttocks, inner arm, inner thigh, and/or the soles of the feet, and to dress residents in long pants and long-sleeved shirts to prevent relatives and other visitors from seeing the bruises and abrasions resulting from pinches and spanks. p.21.

On the morning of July 17, 1981, Danny A. was restrained in bed by an arrangement which kept him flat on his stomach in bed. Danny A. died between 9:00 and 10 a.m. on this date while being so restrained. The county coroner ruled that 14-year-old Danny Aswad's death had been from natural causes: "Mental retardation" and "cerebral malformation" p.21.

Licensing investigator, Michael Avery spent 250 hours at BRI in Rhode Island. He experienced some of the aversives firsthand. He took his shoes off and climbed into the automatic vapor-spray (AVS) station. He stood barefoot on a ridged rubber mat. His ankles and wrists were cuffed. He skipped the usual bucket of water dumped on the head. He got a hit of ammonia two or three inches from his nose. Then he put on the remote vapor spray helmet -- no visibility, white noise, and air-and-water combo sprayed in his face. At first he was scared. The ammonia threw him, and then the helmet went on. He thought he was going to pass out. He was in the station for half an hour, but he says he became so disoriented that he felt it could have been five minutes or two hours. When he got out he needed a minute or two before he could put a whole sentence together. p.22.

During April, 1985 the OFC licensor reviewed student "G"'s behavior charts and learned that from March 9, 1985, to March 20, 1985, student "G" was placed in the Automatic Vapor Station (AVS) on a continuous non-stop basis except for time out of the A.V.S. for bathroom and water opportunities and sleep time. Student "G" was required to wear a white noise visual screen with the noise turned off while sleeping. p.26.

Avery found one student who had been spanked 133 times within two hours. He saw students in wet clothes, shaking two hours after having been doused with cold water. p.25.

On July 24, 1985 a 22-year-old student at BRI named Vincent Milletich died. He was going to be "consequated," reportedly for making inappropriate sounds. He became aggressive and started thrashing around. BRI workers pushed his head between a staff member's legs and handcuffed his hands behind his back. Then they threw on the helmet with the white noise and the blocked vision and put him down on the floor. Vincent went limp. He died at the Rhode Island Hospital. p.25.

On August 28 Avery went back to BRI with Bette McClure, Massachusetts Office for Children (OFC), Acting Director of group-care licensing. For the first time, Avery says, he saw all the aversive sign-off sheets together. There were 60 of them, he says. And a BRI doctor had approved all 20 aversives for each kid. "That absolutely caused concern," he says. "He (the doctor) had 1200 opportunities to say no, and there wasn't a comment". p.25.

On July 16, 1985, student "H" received 173 spanks to the thighs, 50 spanks to the buttocks, 98 muscle squeezes to the thighs, shoulders and triceps, 88 finger pinches to the buttocks, 47 finger pinches to the thighs, approximately 527 finger pinches to the feet, and 78 finger pinches to the hand between 6:00 a.mn. and 9:30 p.m. for "aggressive acts and head to object". p.26.

On July 27, 1985, student "G" received 170 spanks to various areas of the body, 139 finger pinches to an unknown area of the body, 31 muscle squeezes to the triceps, and 139 water squirts to the face between approximately 9:00 a.m. and 5:00 p.m. for "aggressive acts". p.26.

At this school, even when the children return to their living units (operated by the same agency) late in the evening, there is no opportunity for relaxation or recreation. In fact, they report directly from the bus to work carrels that replicate those they just left at the school. They again begin "practicing work" until it is time to get ready for bed. When they complete all of the work in front of them; for example sorting a large plastic dish pan full of plastic tableware into a tableware tray, their attendant comes over, says "good work", pours the sorted tray back into the dish pan, and says "OK - start again". Again, any "inappropriate" movements or vocalizations will be swiftly punished. Even people with severe mental retardation can be expected to respond in anger and frustration to the requirement to perform meaningless, menial tasks day-in-and-day-out, from waking to bedtime. Service providers create untenable environments and then punish individuals for their natural responses.

Visitors to this program were surprised to find that the children were not allowed to break for meals and that the program offered few, if any, opportunities to relax or socialize. In fact, the children attend "school" eleven to twelve hours per day, seven days a week, with only a rare change of routine for a major holiday or weather emergency. There are no periods during the day when children are free from the threat of swift and severe punishment. The living unit that was visited did not contain a dining table large enough to accommodate the eight individuals who lived there. It was explained that portions of meals could be earned during the day. Between the time they woke up and 11 a.m., children could earn portions of their breakfast, delivered to them in their work carrels as a reward for good behavior. Portions of lunch could be earned from 11 a.m. to 4 p.m. and portions of dinner could be earned thereafter. Even mealtimes did not provide an opportunity to relax, let down one's defenses or converse informally with schoolmates or staff.

Children at this school were observed to be quiet, cooperative and well mannered, but they also appeared sullen, frightened, and withdrawn. Most were unable to express their feelings about their treatment verbally, but one young man pleaded with the visitors to help him escape this environment.

In the face of the application of these highly aversive procedures for even non-dangerous and non-disruptive behaviors, most of these young people appeared to have given up their spirit and their will. As one author states, "Nothing negates one's sense of what it means to be human more than the deliberate infliction of unnecessary pain and humiliation on a helpless victim".

There is no question that painful procedures can result in at least a temporary reduction of difficult behaviors. It is also known however, that these procedures are not necessary to decrease behavior problems. Not only is their use unethical and immoral, but these techniques are not needed to effectively change behaviors. Their use should not be tolerated by a society that bases its system of beliefs on the fair and ethical treatment of all of its citizens.

There is simply no truth to the notion that because a behavior is serious it needs or deserves punishment as a response. Many practitioners who, for ethical reasons, began using behavioral techniques that do not require the use of aversive procedures, are now contributing to a "growing body of empirical data which demonstrates that non-aversive procedures are at least as effective and possibly more effective than intrusive interventions".

For What Behaviors Are Aversive Procedures Used?

The typical rationale for the use of aversive procedures is that they are necessary to stop people from hurting themselves or hurting others. Most commonly, aversive procedures are used for self-injurious behaviors (e.g. slapping self, biting self, head banging, eye poking), aggression toward others, and disruptive behaviors. They also sometimes are used to decrease behaviors that are simply idiosyncratic, unusual, or annoying to staff. There are examples in the literature of aversive procedures being used for such non-dangerous and non-disruptive behaviors as:

§ Rocking

§ Hand clapping

§ Finger movements

§ Staring out of the window

§ Thumb sucking

§ Stuttering

§ Saying "and-um", "uh", or "you know"

§ Attempting to leave the room without permission

§ Getting out of one's seat without permission

§ Echolalic speech (repeating the last words said to an individual)

§ Grimacing

§ Inattentive behavior

§ Avoiding eye contact

As an example of the application of aversive procedures for non-dangerous and non-disruptive behavior, one study described the use of white noise at 95 decibels to punish forty children, ages 7-21, all of whom were described as having severe or profound mental retardation, for incorrect responses to a visual discrimination task. Another study, by Kirchner, et al. used electric shock to punish two young children who were diagnosed as having severe or profound mental retardation, for inattention to a picture naming task.

A study by the New York State Commission on Quality of Care for the Mentally Disabled found numerous instances in which individuals with mental retardation were restrained or subjected to punishment for behaviors which "did not pose a threat of serious injury to self or others and which, in some cases were innocuous". The authors characterized many of the behaviors for which aversives were applied as "common responses to everyday life situations". The following is an example from that study:

One student had a behavioral program which called for her to earn tokens for periods of silence and to use the tokens she earned to purchase time to talk. If she talked out of turn and refused to pay her tokens, her hands were placed in restraints behind her back. She would be released from the restraints only after twenty minutes of silence.

The behavior program of a student at another private, residential school provides the following instructions to staff:

When he gestures toward self injurious behavior, he should be made to assume the control position. The control position consists of the individual on his knees, hands grasped behind his back, forehead on ground. He is to maintain this position for fifteen minutes.

Note that this program is to be implemented when the student "gestures toward" rather than when he exhibits self injurious behavior. The wording asks staff to predict what the individual will do next. Such ambiguous instructions are likely to result in the application of aversive consequences in some instances when the self injurious behavior would not have been exhibited.

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, school children who do not have disabilities, or even animals, they would be horrified. But when told they are being used to "help" individuals with disabilities, many people are willing to believe 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.

About 90,000 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". People with even the most severe levels of mental retardation have fewer behavior problems when they are able to make choices, to have impact on their environment, to feel valued and empowered, to be productive and to enjoy freedom of movement and a range of meaningful activities.

It is a sad paradox that the individuals who are most severely disabled 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 a congregate setting 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 institutionalization, 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, mental retardation cannot 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.

It may also be important to staff for them to describe aversive procedures in clinical, detached terms, and to convince themselves that such interventions are necessary to free individuals with severe behavior problems from their disabling conditions. 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 recipients 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 because 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.

Note that there is no discussion of the fact that these reactions are 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.

What About Consent?

Perhaps one of the reasons that the general public is comfortable leaving decisions as to how to treat people with disabilities to the professionals, is their belief that no therapies or treatments can be implemented without informed consent. In theory, this is true. In practice, it is a system that is highly flawed. Children with disabilities are under the guardianship of their parents unless a court has ruled otherwise. Adults with disabilities are their own legal guardians unless a court has ruled them incompetent. Adjudicating an individual incompetent is a complex and time consuming process. In addition, most courts correctly are reluctant to remove guardianship from an individual unless there is a compelling reason to do so. As a result, the vast majority of adults with mental retardation or other disabilities are their own legal guardians and are therefore responsible for providing informed consent for any procedures that may be performed on them.

When an adult with severe or profound mental retardation is his or her own legal guardian, facilities only are obligated to attempt to explain the proposed treatment and to obtain the individual's signature. Other options for addressing the behavior are rarely described. Consent granted under these circumstances cannot be considered "informed consent" since the professional explaining the planned procedure may not be familiar enough with alternative methods, or may simply choose not to present options.

The New York State study found that in many cases informed consent was not secured from either the individuals served, or their family members. The executive director of the facility studied said that he did not feel required to secure consent. When consent was obtained, many family members later reported that they felt coerced into approving the treatments. Families in many cases feel that they have no other choices and that they need to cooperate with whatever is recommended by the professionals working with their family member. Families may feel that the proposed treatment is the best thing for their family member, or even that he or she needs or deserves punishment. Family members, however, should not be condemned for allowing such practices. Families, in the vast majority of situations, make what they feel to be the best choices for their family member, often within a limited range of available options. In the case of the New York facility, families were offered the option of withdrawing their family member from the residential facility if they objected to the treatment plans.

Individuals with developmental disabilities and their families are vulnerable to the treatment decisions made by others. They are dependent on the professionals who work with them for shelter, food, clothing, social contact and for all other aspects of their lives. The individual's opportunity to make an "informed decision" is compromised by this imbalance of power, by the fact that the explanation of the proposed treatment by staff might not be wholly objective and by the individual's inherent intellectual limitations.

Do Aversive Procedures Work?

Few would maintain that aversive procedures are unlikely to have a measurable impact on the performance of the behaviors to which they are applied. Most of us would change our behavior if pain was used as a consequence. However, "if our criterion of 'effective' includes long term behavior change which maintains in a variety of normalized and integrated community environments, educative approaches are by definition more effective than aversive ones". The initial suppression of behaviors is commonly reported in the literature but the reported effects of generalization and long term maintenance are not impressive. This is true because aversive procedures by their nature:

§ do not teach replacement behaviors,

§ do not address the functions of the behaviors,

§ do not leave the learner with new skills for dealing more appropriately with his or her frustrations and, perhaps most importantly,

§ do not require that environments and expectations be modified to be more responsive to the preferences and needs of the individual.

In addition to the resulting compromises of human dignity, the use of aversive procedures has inherent problems and side effects. When aversive procedures are used:

§ Behavior change is often only temporary. When punishment is stopped, the behavior is likely to return.

§ Behaviors other than those being punished can be inhibited.

§ The effects can be very situation-specific.

§ Social withdrawal (the person being punished avoiding the punisher) can result.

§ Aggression on the part of the person being punished can result.

§ Emotional side effects, such as anger, anxiety, depression, and lack of trust can be produced.

§ Physical side effects, such as high blood pressure, muscle tension, increased respiration, and heart palpitations can occur.

§ Their use can become "addictive" to the punisher, particularly because the use of aversive procedures often has immediate short-term effects.

§ It is very likely that there will be escalation of techniques used or that techniques will be applied to non-dangerous, non-disruptive behaviors.

Although aversive procedures often result in a decrease of problem behaviors, this is not always the case. One reviewer of this paper, a national expert in the humane treatment of people with disabilities wrote:

I personally know eighteen children and adults who have been in cattle prod "programs" for 3-9 years and the shock continues. Only those cases that work are reported in the literature. I recently worked with a little boy on whom a well known and well published researcher had used a cattle prod. He told the boy's mother to go to a farm implement store and buy a prod and use it for P.'s self injury. He trained her and consulted with her over the days, weeks, and months. When it did not work, he said, "Increase the shock". When it still did not work, he said, "Do it on more sensitive parts of the body!". When it still did not work, he urged her to shock the child between his legs, under his arms and behind his knees and to increase the shock some more. This went on for over a year. By the time I saw the child he had over 400 burn marks on his tiny body. Worse, he walked like a robot, kept his gaze down like a submitted being and, when he did look up, his eyes were empty. The behaviorists are bent on control and when not gotten they are driven to escalate their arms. This past year I also worked with a young woman receiving "faradic therapy" via a remote control device. Her "staff" had placed electrodes between her legs and when she became aggressive they simply zapped her. She too was machine-like. The first time I saw her she got up from her bed in a padded suit and a masked and locked helmet. She walked with her arms outstretched saying over and over, "Go home? Go home? Go home?"

One must ask, as one author does, at what point do therapy and cruel and unusual punishment part company? "Aversive therapy is arguably in a class of its own. It aims directly to produce pain in an individual, and from the individual's experience of acute pain flows all of the treatment's supposed 'therapeutic' merits, namely, the cessation of an unwanted behavior". Though other treatments and procedures (surgery, dental work or physical therapy, for instance) can cause pain, the pain is an undesirable by-product of a beneficial procedure. The surgeon, the dentist or the physical therapist does not set out deliberately to cause pain. The use of aversive procedures in the modification of behaviors is the singular example of professionals choosing to inflict pain in an effort to provide treatment.

The reduction of dangerous or disruptive behavior can be achieved without sacrificing the development or maintenance of self-esteem, the development of relationships with others, or the preservation of human dignity. We cannot afford to define success as only the reduction of a behavior without considering the sacrifice in terms of quality of life and the well being of the people who are subjected to aversive procedures.

What Alternatives Are Available?

Behavior is an individual's attempt to grapple with the demands of the environment within which he or she lives. Viewed from this perspective, the role of behavioral programming is not to "control" the dangerous or disruptive behavior, but rather to assist the individual both to learn more adaptive responses and to gain the skills necessary to function successfully. There exists a range of proven and effective techniques to accomplish these objectives. Positive approaches:

§ Attempt to understand the meaning a behavior has for a person.

§ Offer the person a positive alternative.

§ Utilize non-intrusive intervention techniques.

§ Offer strategies which have been validated and are intended to be used in integrated communi settings.

The use of positive approaches implies recognition of the fact that, although some behaviors may appear so, no behaviors are "maladaptive". All behaviors are adaptive for the person performing them. Behaviors are learned as a response to a particular environment or in an effort to accomplish what an individual needs or wants. Positive, or non-aversive strategies for changing behavior work equally rapidly, work with behaviors that are equally severe and are at least as effective as aversive strategies.

An important difference between positive strategies and aversive strategies is that positive strategies make desirable responses more probable (aversive strategies attempt to make negative responses less probable). As desirable behaviors increase, problem behaviors, including aggression, self-injury, tantrums, and property destruction become less probable. When individuals with disabilities are treated in ways that validate their worth and when their attempts to communicate through their behavior are responded to positively, they have less need to behave in ways that are dangerous or that challenge those around them. One author states:

Positive reinforcement does control behavior, no less than coercion does. But it can teach us new ways to act, or support what we have already learned, without creating coercion's characteristic by-products - violence, aggression, oppression, depression, emotional and intellectual rigidity, and hatred.

Why then are positive approaches not used exclusively? There is a range of possible reasons. One is that positive approaches take more planning, time, and forethought. Only the astute teacher, parent, staff person, or psychologist, willing and able to discover the meaning of a behavior for a particular individual, and then to design positive strategies to address those meanings, will achieve behavior change that maintains over time.

Another reason may be that aversive strategies are simpler, more measurable, and therefore, more easily researched. A positive program might include environmental adaptions, a reinforcement schedule, and several methods for increasing an individual's ability to communicate or otherwise impact on his or her environment. Compared to sprays of water, decibels of white noise, or volts of electric shock, the many aspects of a good positive program may be more difficult to quantify. Many researchers' careers have been built on the design and implementation of programs using aversive methods. These researchers perpetuate a body of written work on the use of these techniques. Researchers with a reputation for producing publishable work are more likely to be able to secure additional private and public funding. "Governments, private foundations, and other funding bodies have been slow to support research into the alternatives to punishment". For this reason, and because these techniques are newer and less familiar, the number of publications on positive interventions lags behind that for aversive strategies.

Comparisons With The Treatment of Political Prisoners

A monograph published by The Association for Persons with Severe Handicaps (TASH) compares the types of aversive procedures used with children and adults who are disabled with those used in the torture of political prisoners as reported by Amnesty International. A similarity between people with disabilities and political prisoners is that their freedom is severely restricted for long periods of time without their having broken any laws. The authors of the TASH paper found that although the intensity of the aversive procedures used on some political prisoners was frequently more severe, the types of aversive procedures used with both populations correspond closely. Additionally, it must be remembered that many children and adults with mental retardation spend decades, or even their whole lives, in environments in which the use of aversive techniques is status quo.

As noted earlier, Amnesty International has defined torture as "The systematic and deliberate infliction of acute pain in any form by one person on another or on a third person in order to accomplish the purpose of the former against the will of the latter". It is well known that victims of torture experience lasting physical and emotional effects. A recent study looked at the psychological effects of torture on forty-four survivors of torture who had emigrated to the United States, mostly from Chile, Argentina, and other Latin American countries. Most of the survivors had been detained and tortured between 1973 and 1976. A decreased ability to concentrate (59%), a decrease in memory (59%), anxiety (38%), difficulty in establishing new relationships (32%) and difficulty with feeling emotions (27%) were found. A comparable study in Canada of forty-one torture survivors found similar results. Most of the survivors studied reported suffering from anxiety and depression, and about one third reported suffering from emotional withdrawal, irritability, aggressiveness, or impulsivity.

Many people with mental retardation experience, on a daily basis, the frustration of trying to keep pace with a society that places high value on intellectual capacity. They are already victimized by formal and informal policies that undermine their ability to be fully contributing members of their communities. In addition, individuals with mental retardation are far more likely than the general population to have a neurological or a major language disorder. For these and other reasons, people with mental retardation suffer disproportionately from a range of emotional problems including depression, adjustment disorders and anxiety disorders. There is irony in the fact that in the effort to eliminate aggressive and impulsive behaviors, practitioners employ techniques that have been proven to result in such behaviors. It can be assumed that the psychiatric effects that plague former victims of torture would also plague, albeit, perhaps to some lesser degree, the victims of aversive procedures. It must then be viewed as inexcusable to burden an already oppressed population with these additional hardships.

Conclusion

Behavior, whether it is a baby crying, a toddler having a tantrum, an adolescent not coming home, or an older person not talking, communicates. Without the tool of speech, people with mental retardation are often driven to more drastic means (aggression, self-abuse, destruction, silence) to communicate their needs. These drastic means must not elicit drastic responses that cause pain and alienation, but rather must elicit understanding, patience and sophistication in translating their message.

Some people with mental retardation or other disabilities have dangerous or disruptive behaviors and may need considerable help to change their behaviors. Such people often live in settings that are isolated from public view. The objectionable methods used in these facilities have not been subject to public scrutiny. Only by bringing these acts of oppression into the public eye will needed policy changes and legal protections be enacted. We, as a society, cannot afford to continue to ignore these abuses.

People who are institutionalized or subjected to painful procedures are no less political prisoners than some of their counterparts in third world countries. We fool ourselves if we believe that they are institutionalized "for their own good" or that the use of aversive procedures is a necessary or conscionable part of their treatment. These people comprise a devalued segment of the population. Their plight is magnified by the nature of their condition which hinders their ability to speak out against mistreatment and makes them vulnerable to this abuse.

We cannot condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population. Anyone who is concerned with human dignity and with the ethical treatment of all people should express outrage at the continued use of behavior change procedures that cause pain.

This report calls on Amnesty International to publicize these atrocities and to take action against the continued abuse of persons with disabilities.