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On display: your child is being humiliated.

Anne, a 30-year-old woman with spina bifida, feels only bitterness about her early medical experiences. She was a victim of what she calls "public stripping." When she was a child and adolescent, her semi-annual orthopedic examinations always took place with 20 or more doctors, residents and physical therapists in attendance. After the hospital acquired videotaping equipment, the procedures were videotaped. During the exams, Anne was permitted to wear only underpants.

Once, when she was 12, she kept on her training bra. However, while explaining something about her back, the doctor in charge took the bra off without saying anything to her but with noticeable irritation. A nurse quickly apologized -- not to Anne but to the doctor.

Anne knew that when her sisters and her classmates went to the doctor, they were seen by just one doctor in a small, private room. No one ever explained to her why she was examined in front of a group. No one ever told her or her parents she had any alternatives. No one ever considered whether she found it embarrassing or upsetting to be viewed nearly naked by so many people. No one ever admitted she was being used as a teaching tool.

As a young woman, Anne initially had trouble enjoying sex -- not because of the real yet manageable practical difficulties imposed by spina bifida -- but because nudity was so linked in her mind with invasive medical scrutiny.

Public Examinations

Anne's experiences and feelings are not unique. Privacy in medical examinations may be the norm for persons without disabilities, but it is not the norm for people with disabilities and, in particular, children with disabilities. Doctors at hospitals and clinics which specialized in "pediatric handicapping conditions" such as spina bifida, cerebral palsy, muscular dystrophy, brittle bone disease and dwarfism have traditionally displayed their patients in front of colleagues, residents, therapists and other professionals. They often included nonmedical professionals. The practice continues today, although it may be slightly less extensive than it was 10 or 20 years ago. The patient is usually examined without a hospital gown on, but other details may vary such as whether the person undresses in the examining area or is forced to disrobe with others in the hall.

Patient Humiliation

Joe, who has cerebral palsy, was repeatedly examined in an amphitheater with resident physicians and medical students lining up to pull at his arms and legs to see just how tight his muscles really were. Social workers, invited for no clinical reason except that they were part of the "team," looked on attentively. This went on for Joe until he turned 18. He then told his parents he would never again go to a doctor to treat his disability. And he never has -- even though there may be theraphy which could improve his mobility.

This issue is of more than mere academic interest to me. Like Anne and Joe, I was born with a physical disability and so it was only happenstance that I avoided public stripping.

Unlike some perhaps more egalitarian instituions, the rehabilitation center and hospital I went to as an outpatient allowed parents, for a fee, to arrange private appointments for their children, and fortunately, my parents could afford to do so. Moreover, since the aim of the examinations was solely to provide my parents and me with information rather than to provide a learning experience for other people, usually very little clothing removal was necessary. I can only imagine, however, how very badly I would have felt if I had been expected to submit to public examinations.

Medical Misconceptions

Doctors, though, like much of society, tend to view people with disabilities not as individuals with multifaceted concerns but as victims of fate whose lives are defined and distorted by their disabilities. Thus, they find it hard to perceive that anyone "suffering" from a permanent "handicap" would be interested in anything so supposedly trivial as physical modesty and privacy. Additonally, in the case of children with disabilities, any preconceptions doctors have about people with disabilities are combined with preconceptions they may have about children, including the assumption that children do not and should not care who sees them naked as long as sexual exploitation is not involved.

For the medical profession, the examination procedures for children with disabilities are reasonable and efficient because they facilitate teaching and the exchange of medical knowledge. Why wouldn't the "handicapped" be eager to help in the development of cures and new treatments? Indeed, people with disabilities should be grateful that the medical profession is so interested in them. After all, they are not always the easiest or most satisfying patients.

However, people with disabilities who seek medical advice are like anyone else seeking such advice. By and large, we want to receive a medical service, not render one.

It is admittedly important to increase understanding of the medical aspects of lifelong disabilities just as it is important to increase understanding of conditions such as heart disease, osteoporosis and pregnancy. However, while persons with these conditions may have a resident or medical student play a role in their case, they are not usually expected to submit to videotaped public examinations. Indeed, many general hospitals, including many teaching hospitals, have adopted a patients' bill of rights which give patients the right to refuse to have any nonessential personnel present during examinations and treatment procedures.

Respect for Privacy

There are many times, of course, when a physician will have a legitimate reason for wanting a consulting doctor to see a patient. However, there is no reason why such consultations cannot be conducted under circumstances which afford the patient maximum privacy. Moreover, a patient or parent attempting to make an informed decision about whether to pursue a certain type of treatment may wish to solicit second, third or even fourth opinions. A person may well prefer, though, to see various doctors separately rather than together in a group, so he can obtain opinions which are truly independent rather than a consensus opinion which may be heavily influenced by the doctor who is advocating a particular treatment.

Few people seeking medical treatment place modesty above clinical imperatives. However, many youngster with disabilities have been placed in situations where respect for their privacy, far from being a priority, has not even been a consideration.

Examining a patient in front of and with the participation of an audience, unless done with the complete willingness of the child and not just the parent, constitutes bad clinical practice even when considered from a purely clinical viewpoint. A person may be so upset and intimidated that he will not disclose all of the information a doctor would need to know in order to provide effective treatment. It is virtually impossible for a patient to develop any rapport with a doctor in this type of situation. Indeed, most of the conversation during these types of examinations take place between the different professionals involved rather than between a professional and the patient.

The actual results of the examination may be influenced as well. It is well established that when a person with cerebral palsy is tense or nervous, his muscles may become tighter as he may have even more involuntary movement. Similarly, a youngster with a cleft palate may speak less clearly if he or she if faced by many staring eyes.

The Trauma of Public Stripping

The humiliation of public examinations obviously presents quality of life concerns for patients. People who have been required to submit to the experience of being examined repeatedly in front of a group are often traumatized. The trauma stems not only from being viewed naked by so many people, not to mention the frequent addition of videotaping, but also from listening to oneself being discussed as if one were a defective machine in often less than tactful medical terms such as "deformed," "spastic" and "para." For example, Susan, who has muscular dystrophy, was deiven to nightmares and bouts of crying by hearing doctors -- who did not solicit her views or even refer to her by name -- dispassionately debate what surgeries she should have and the order in which she should have them.

Some young people feel aroused during the examinations and then, not realizing that it is a natural physical response, are ashamed and confused.

Then there are children who cope with public stripping by trying to separate their minds from their bodies and pretend they are somewhere else, such as on the ceiling. This is akin to the disassociation practiced as an emotional survival mechanism by many children who are being abused. Some patients are able to disassociate so successfully that they are slow to respond to the doctor's instruction or respond incorrectly. For example, a child may bend his knee when he has been told to straighten it. This may lead onlookers to erroneously assume that the child is apathetic or not alert. Indeed, the bahavior of children under stress in these situations may strenghten the stereotypes that the medical community and larger society have about people with disabilities.

Unanswered Questions

Left unanswered is this question: if a person can be expected to submit to medical examination procedures that are not designed for his benefit, can other things be done to him by doctors which are not in his exclusive best interest? For example, does a hospital's interest in giving practical experience to residents ever tip the balance in favor of a surgery recommendation in cases where it is not entirely clear whether surgery will accomplish anything?

Public examinations, of course, do not occur in islation. Like other groups that have been discriminated against, people with disabilities are treated as second-class citizens in many ways by the health care system. Often doctors shy away from treating people with disabilities for their ordinary health needs. Some gynecologists, for example, do not feel comfortable seeing women with Down syndrome. People with spinal cord injuries and other significant physical disabilities are often unnecessarily hospitalized, even though with appropriate rehabilitation and social services, most people with disabilities can live in the community. Many physicians, not understanding how limitations which cannot be cured can be compensated for and adapted to, feel that it is justifiable to withhold treatment from viable infants with certain types of disabilities.

Discrimination

Both children and adults suffer from the discriminatory practices that have resulted from the uninformed attitudes that too many in the medical establishment have about people with disabilities. Children are the more vulnerable group because they lack the technical power to give or refuse consent. Moreover, it takes time for children -- and especially children with disabilities -- to learn that they can express their views and that they have rights they can insist be respected. As for parents, they may be coping with their own prejudices about disability and may be both unsure about what is in their child's best interest and the range of alternative and rehabilitative resources available. Often desperate for their child to receive any type of treatment and feeling they must be supremely grateful for any treatment the child does get, they may not always be able to act as effective advocates.

Adults with disabilities, though, are slowly beginning to insist that all persons with disabilities have access to the same level of health care and range of health care options that they have would have if they did not have disabilities. However, this is a matter that should concern everyone, with or without disabilities. If patients with disabilities can be required to accommodate to the interests and prejudices of the medical establishment, so can anyone else without the money, savvy or social power to resist.

The most important lesson all health care professionals need to learn is respect for the dignity and individuality of their patients including those patients with whom they may not particularly identify. This lesson is not taught in examinations in amphitheaters.

Lisa Blumberg is a corporate lawyer for Aetna Life Insurance and lives in West Hartford, Conn. She graduated with a bachelor's from Wellesley and a law degree from Harvard. Ms. Blumberg received the National Easter Seal Society and the American Association of Disability Communicator's 1991 EDI Award for an earlier piece she wrote on "public stripping" published in the February 1991 issue of Glamour magazine. Ms. Blumberg has published five articles in Exceptional Parent.
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Title Annotation:disabled children are physically examined before medical students
Author:Blumberg, Lisa
Publication:The Exceptional Parent
Date:Oct 1, 1991
Words:2052
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