'Discredited' and 'discreditable': the search for political identity by people with psychiatric diagnoses.

• Author: Stefan, Susan

You're never the same--mental health diagnosis is an opinion and attitude. You cannot cure or have remission from others' attitudes of rejection. (1)

Friends and family--they don't understand my illness/disability--they think I am getting away with something--that there is nothing wrong with me. (2)

INTRODUCTION

Identity matters. In particular, identity matters to people who are stigmatized and stereotyped because they belong to a socially disfavored group. Although individual members of these groups may have very different ideas about how to respond to prejudice and mistreatment, the matter of identity itself--membership in the group--is generally not at issue. Justice Clarence Thomas and the Reverend Jesse Jackson may have sharply conflicting ideas about the meaning of being an African American in our society, but the identity of each man as an African American is hardly open to question.

When it comes to disabilities, however, these distinctions begin to blur, in part because disability is as much about environmental context and social functioning as it is about any physical or mental characteristic. Asthma may or may not be a disability, depending on the presence of pollen and pollutants in the air. Mild mental retardation may be less disabling in a rural farming community than in a busy urban environment. In addition, impairments exist along a spectrum, both physical and functional, rather than representing a dichotomy between a class of clearly identified disabled people differentiated unmistakably from nondisabled people. Therefore, a person's self-identification as "disabled" is often not as automatic as self-identification with respect to race and sex. In fact, self-identification as a person with a disability is often a long, complex, and difficult process. In this respect it may resemble self-identification as gay or lesbian.

Disability, unlike race and sex, but like sexual preference, is usually not identifiable at birth, (3) and often becomes salient in an individual's life after she has formed a personal identity. Indeed, one of the most hurtful aspects of disability discrimination is that newly disabled persons find it very difficult to accept that people who knew them before they became disabled can treat them so differently once they are disabled, and people with hidden disabilities are shocked when they are abandoned by old friends and even family after they reveal their disabilities.

The fact that disabilities exist along a spectrum contributes to another disparity between the identity of disabled people and the identity of people in other groups that experience discrimination. Because disabilities exist along a spectrum, it is unclear when someone actually becomes "disabled." Disability is a status that is initially identified, named, or conferred, not by the individual, but by "experts," usually medical experts, although the ramifications of disability are significantly social and political.

Furthermore, unlike race or gender, experts hold themselves out as being able to mitigate or treat disability. (4) Although people with disabilities have challenged the claims and dominance of experts for many years, experts retain a position of primacy in defining both the categories and the meaning of physical and mental disability, and are considered the only authority on the mitigation, treatment or cure of the disability. (5)

The centrality of experts to the experience of disability has enormous social, legal, and political consequences. A large number of cases under the Americans with Disabilities Act involve claims by the plaintiff that she is disabled. (6) Defendants dispute these claims by hiring experts to refute the plaintiff's claims to identity as a person with a disability. In many cases, the Supreme Court has rejected the plaintiff's claim to belong to the protected group--persons with disabilities. (7) This process--permitting experts and the judiciary to determine whether an individual fits into a protected class--would be unthinkable in the case of race, gender, age, religion, or sexual orientation.

Moreover, some disabilities are not readily apparent. People with invisible disabilities confront issues about disclosure, whereas people with visible disabilities have fewer secrets to keep and choices to make in this arena. (8) Issues surrounding self-revelation and "coming out" are crucial to many people with invisible disabilities. These people may go to enormous lengths to conceal their disabilities from their colleagues at work and even their families. In this respect they are also similar to those in the gay and lesbian community.

Within the contingent and malleable category of disability, psychiatric disability raises perhaps the most perplexing questions about identity. First, although almost every disability has some effect on social functioning, psychiatric disability is, from the point of view of the external observer, completely characterized by difficulties, deficits, or aberrations in social functioning. In the absence of unmistakable problems in social functioning, an individual's self-report of psychiatric disability is likely to be discredited, disbelieved, or minimized. An individual with a severe physical disability who climbs Mount Everest or performs some equivalent feat is lauded for courage and tenacity; (9) but an individual who reports severe psychiatric difficulties yet continues to function is simply disbelieved. (10) Or worse, the person is criticized for self-pity, exaggeration, or self-dramatization. (11)

Second, psychiatric difficulties not only exist along a spectrum of impairment, as do most disabilities, but they are also temporally contingent: the same person may vary over a period of weeks between functioning extremely well and being immobilized and dysfunctional. (12) Though some people with psychiatric disabilities cycle between states of functioning well and disability, it is also true that many individuals experience severe psychiatric disability while concurrently managing to "pass" as functional. (13)

Finally, although almost everyone who receives a diagnosis of mental illness personally experiences profound emotional distress, the identification and transformation of profound distress into disability, by any of its various names--disability, mental illness, insanity--is made by an "expert," who is by definition an individual outside the group. Although some mental health professionals are also people with severe psychiatric disabilities, very few are public about their history and experiences.

The determination by experts that a person has a "mental illness," sometimes after fifteen minutes of evaluation in a hospital emergency room, unites into one category millions of people with extraordinarily divergent personal experiences who might otherwise never think to identify with each other. The classification itself is often disputed and subject to widely conflicting opinions and disagreement, both among the experts and among the persons labeled mentally ill or mentally disabled.

For example, some people for whom the diagnosis of psychiatric disability has been crucial to their identity deny that they have any mental illness at all. According to Janet Gotkin:

"That is part of our condition, to feel despair. That is what I am feeling and it is black and it wells up inside until you feel that you will explode with the heaviness of this sense of yourself, alone, in this unfeeling darkness that can be the world. Women and men have looked down into the pit that is themselves and that is life and questioned the meaning and mourned the futility of it all. No amounts of Thorazine will ever make this feeling go away." (14) She continues:

This was not an illness. I was not being "sick" and having symptoms. This was me--living....

"There is no such thing as schizophrenia, not outside some psychiatrist's imagination. There is pain and people's odd convoluted ways of trying to survive in the world. That's real. Not mental illness." (15)

This perspective is different from people with physical disabilities who refuse to concede that their illness or impairments have rendered them disabled. In the case of psychiatric disability--and only psychiatric disability--a significant number of people with psychiatric diagnoses deny that they have a medical impairment at all, as opposed to denying that the impairment disables them. (16) However, it is important to note the general fallacy of the charge by some psychiatrists that people with psychiatric disabilities deny that they have any problems at all, and that this "lack of insight" itself requires treatment. It is far more accurate to say that some people with psychiatric diagnoses deny that they have a medical impairment suitable for diagnosis and treatment by psychiatric experts. Virtually all the written accounts by former psychiatric patients who reject psychiatry acknowledge that they have experienced fundamental personal emotional crises. (17) Sometimes these crises are called spiritual, and sometimes existential, according to the philosophy of the individual. People with this perspective speak of recovery and healing rather than treatment, and it is clear that for many of them, the social consequences of those crises--involuntary commitment and forced treatment--are political issues, and their political identity as a former psychiatric patient plays as crucial a role in forming their personal and political identity as race, gender, or sexual preference.

Others who concede that their lives have been profoundly affected by psychiatric disability appear to deny that it plays any part in their continuing personal identity. William Styron, author of Darkness Visible, says at the end of the book that "[slave for the awfulness of certain memories it leaves, acute depression inflicts few permanent wounds." (18)

Still another group of people believes that psychiatric disability is central to its identity...