Saturday, November 22, 2008

Why Don't People with Mental Illnesses Embrace Disability Identity?

I've only ever been to one disability studies conference, and I should go to more. I gave this paper at the 16th Annual Meeting of the Society for Disability Studies, "Disability and Dissent: Public Cultures, Public Spaces, " held at the Bethesda Hyatt Hotel, June 12-15, 2003. It was different from most other conferences I've been to. I remain interested in the relation between people with mental illness and disability movements.

Why Don't People with Mental Illnesses Embrace Disability Identity?

There are legal and financial benefits from identifying as disabled such as protection under the ADA and disability benefits, but despite these, people with mental illness are hesitant about identifying as disabled. This reluctance is especially clear among those with mental illnesses who manage to hold jobs and sustain relationships with significant others. Little empirical work has been done to examine this, so this presentation is speculative in addressing what might explain this phenomenon. Most obviously, people may wrongly believe that the term disability is restricted to those with physical impairments. Furthermore, they may believe that if they are able to hold a job, then they cannot count as disabled. But there may be more subtle reasons. The category of "disabled" may seem disempowering, since it often carries a connotation of being powerless. The Social Model of disability is specifically designed to be empowering, laying the responsibility for disability on society, and portraying people with physical and mental impairments as merely different. There are striking parallels between the Social Model and the antipsychiatry movement of the 1960s and 1970s, which also argued against a medical model. Now antipsychiatry has been largely rejected, and the mentally ill today tend to embrace the medical model, which is promoted heavily by pharmaceutical companies and which seems to reduce the stigma of mental illness. So even the Social Model of disability may not be appealing to people with mental illnesses. If the people with mental illnesses are to be fully included in the disability community, these concerns need to be addressed.

Identifying as Disabled

My first assumption in this paper is that people with mental illnesses are reluctant to embrace a disability identity. I should explain what I mean by this and provide some justification.
Maybe the most obvious way one can identify as disabled is in a rather superficial sense. One can claim financial benefit and get both medical and social services (at least in some countries) by proving that one fits with the official definitions of disability. Parents can sometimes get extra educational resources for their children if they show them to have physical or cognitive disabilities. One can also try to claim legal protection against discrimination through legislation such as the Americans with Disabilities Act.

Whether a significant proportion of people with mental illnesses who could qualify for various forms of disability benefits but do not claim such benefits is a matter for research. Of course, one might claim such benefits without any deeper psychological identification as a disabled person. What kinds of psychological identification are available? One may call oneself disabled and explain one's lifestyle to other people by reference to a disability. One may identify oneself as a member of a group of disabled people who communicate with each other and meet on a regular basis. The group could take on a public role, raising awareness in the rest of society about the nature of disability and the experience of people with disabilities. The group could also take on a political role, lobbying governmental organizations and defending the rights of group members. The group can engage in academic discussion and studies of issues relevant to its disability. An individual participating as a member of the group is at least likely to identify with the group in different ways corresponding to these different activities.

A final way in which one might identify as disabled is in perceiving a commonality between oneself or one's group with other people or groups with other disabilities. It is worth adding here a comment about the social model of disability. On this view, people with disabilities may have physical or mental differences from "normal" or "abled" people but the cause of the disability is understood as society, and on this view one may identify with other oppressed groups such as minorities or women who are disabled by the attitudes and practices of the rest of society.
People with mental illnesses do generally acknowledge that they have those illnesses, although there are of course studies suggesting that many people with psychological disorders either do not acknowledge their problems or else do not seek treatment for them. Some groups exist for people with major mental illness for them to share information with each other about their disorders and ways to get help for their problems. These include formal groups with membership requirements, recovery groups that often insist on anonymity, and many Internet groups that are open to anyone. There are national advocacy groups such as NAMI in the US and MIND in the UK which are especially focused on major mental illnesses which are often chronic.

What is striking is that both individuals and groups of people with mental illness rarely describe themselves as people with disabilities. Sometimes people who are unable to work due to chronic mental illness describe themselves as "on disability" but even in such cases, they often have little inclination to identify as disabled in a stronger sense. People whose mental illnesses make it difficult for them to sustain friendships or loving relationships with others may see themselves as disabled in some ways. For people with mental illnesses who are able to maintain themselves in work and love, it is much easier to "pass" as someone without a mental illness, and such people are rather less likely to identify as disabled.

Why Don't the Mentally Ill Identify as Disabled?
Having clarified to some extent what I mean by saying that people with mental illnesses do not identify as disabled, I now turn to the next aim in this paper, to set out possible reasons why such people are reluctant to identify as disabled.

One of the first concerns may be the widely shared misconception that disability must be due to a physical impairment. While the popular understanding of disability is mainly based on physical impairments such as blindness, paralysis or lack of limbs, or deafness, there's no reason to restrict the category disability to such cases. Indeed, there is probably widespread agreement that severe mental retardation should count as a disability, and since mental retardation concerns intelligence, it is a paradigm of a psychological problem. Of course, mental retardation may well have physical causes -- they are often genetic -- but the effects are mental as well as social. The etiology of serious mental disorders such as manic depression, schizophrenia or unipolar depression is still under investigation, but there is a good chance that they are at least partly physical. So this concern provides no reason to prevent seeing mental illness as a disability.

The second sort of reason that could be a factor is the belief that an illness cannot count as a disability. This in turn may be based on different possible ideas. One source may be that it is thought that disability is a static condition while an illness is a process. The central idea behind this seems right -- short-term illnesses and maladies do not seem to count as disabilities even if they are serious. A person with a broken arm may be temporarily disabled, but it would be odd to apply the label of "disabled person" or "person with a disability" to her. But as has been argued by Susan Wendell,[1] it is a mistake to exclude chronic illness from the category of disability. Paradigm disabilities are not always static but in fact can develop and change with time. Furthermore, chronic illnesses can be relatively static and permanent conditions. So this sort of concern provides no real barrier to understanding many mental illnesses as disabilities.
Some may think illnesses cannot be disabilities because illnesses are not serious enough in their effects. However, as a strict universal claim, this is obviously false -- one need only look at the suicide rates associated with mood disorders and schizophrenia. Such a consideration might be worth considering seriously is if we restrict our focus to cases of illnesses with which people can still work and have long-term relationships with other people. Indeed, this sort of reason seems right to exclude many minor illnesses and maladies from the category of disability. But even this restriction is implausible, since many people with paradigm disabilities such as blindness or deafness are able to both work and love while still remaining in the category of the disabled. So we might move to a second, greater restriction: maybe the central idea here is plausible in the case of people who with treatment or technological aids is able to compensate completely for their illness. For example, people with manic depression (in ideal cases) may be able to keep their condition under complete control through the use of medication and psychotherapy. Would this in itself mean that they are not disabled? Again, this is implausible. For example, if a person who is missing a limb has a prosthetic limb that is fully functional, would this mean that person was no longer disabled? This is not clear, and opinions or intuitions may differ. The US Supreme Court has in several decisions apparently concluded that such people do not count as protected by the Americans with Disabilities Act.[2] So maybe there is some plausibility to this view, with this major restriction, but it deserves further discussion, for which I do not have time. Since the second restriction does not apply in most cases of major mental illness, I will set this point aside.

The final reason people with mental illnesses might have for being reluctant to identify as disabled is not so much conceptual as emotional. They might feel that the stigma of mental illness is enough in itself, and they do not want to take on the extra burden of risking the stigma of disability. I can illustrate this with an example from Lucy Johnstone's Users and Abusers of Psychiatry.[3] She describes the case of a person who calls himself John Baptist, from an episode of a 1995 BBC documentary series called Minders. John is a black man who believes he was born white, that he is descended from the British royal family, and that his sister has been cannibalized. He does not believe he has a mental illness and does not want psychiatric treatment, because he has had unpleasant and unproductive encounters with psychiatry in the past. However, the authorities go to a tribunal and assert that he is "angry, irritable, shouting at people, verbally aggressive" and has inappropriate beliefs. He is forced to take medication, which he hates, and this changes him to a sad and hopeless man, although he never abandons his unusual beliefs. In one of the final scenes of the documentary, one of his treatment team encourages John to sign a form to confirm that he is "permanently and substantially disabled" by mental illness, in return for a bus pass. Johnstone uses the example to illustrate her claim that young black people are highly suspicious of mental health services, but it also shows how identifying as disabled can be a blow to one's self-confidence. This is not to say that this is always or even often the case, and of course it should not be the case. Naturally, there should be no stigma attached to mental illness per se, nor to disability per se.

The Relation between the Social Model of Disability and Antipsychiatry
Now that we have some grasp on possible reasons why people with mental illnesses may be reluctant to identify as disabled, we can move on to ask how it could be helpful to make this identification. The most straightforward reason is that it can entitle one to financial benefits, subsidized or free medical care, and social services, as well as legal protection against employment discrimination. These are important benefits that should be conferred by enlightened societies.

However, there are other sorts of benefits. First, there could be benefits from joining groups of people with disabilities in sharing information and learning from other people how they negotiate a rather hostile world. Second, identification as disabled could have benefits of reducing a sense of isolation both through solidarity with others and increasing possibilities of friendships with other people. Third, being part of a group of disability studies can expand ways of understanding mental illness. In the remainder of this paper, I want to discuss the relation between debates over the conceptualization of disability in disabilities studies and the debates over the conceptualization of mental illness.

In the US, people with severe and chronic mental illnesses are in many ways some of the most disenfranchised members of society. People with schizophrenia and manic depression are not well organized into political groups. There is a very familiar stigma attached to mental disorder and the rights of the mentally ill are often under attack when they are portrayed as potentially dangerous and a menace to society. Over the last quarter of a century at least, it has been thought that the most effective way to combat stigma has been to insist that mental illness is as real as physical illness, and indeed, it has been thought politically important to argue that mental illness is at root a physical illness. (For example, NAMI and parity.) It is striking how the situation has changed since the 1960s and 1970s there was a very active movement inspired by the work of thinkers such as R.D. Laing, Thomas Szasz, Michel Foucault and a number of feminist theorists such as Phyllis Chessler and Kate Millett, which argued against a medical model for mental illness. This view has to a large extent ceased to play a significant role in contemporary debates. It is plausible that there are important parallels between this movement, loosely collected under the term "antipsychiatry" and the current social model of disability. So there may be lessons to be learned on both sides from seeing the connections between these two approaches.

Those who have been called antipsychiatric theorists have held a wide variety of different views, and it is problematic to lump them all together. In this presentation, I do not have the time to make careful distinctions between the different strands of thought within the movement, but it is at least worth setting out some of the basic ideas. All these theorists shared a deep suspicion of the use of psychiatric technology and power to make individuals conform to the values of society, through enforced treatment and hospitalization. Works such as Erving Goffman's Asylums showed the shocking conditions in which thousands of long-term patients in state mental hospitals were kept. Movies such as One Flew Over the Cukoo's Nest and Ken Loach's Family Life brought such views to a wide audience, and these ideas fit well with a wider distrust of the uses of the power of the state to crush other points of view that was especially prevalent in the 1960s and 1970s with the rise of the civil rights movement, the anti-war movement, women's liberation, rock music and the growth of the recreational use of drugs.

One strand of antipsychiatry has been set out by the libertarian Thomas Szasz. He argues that mental illness does not exist because the very idea is a conceptual mistake. He has argued consistently that not only does the state infringe on the rights of people when it forces treatment on them, but also that people diagnosed with mental illness should receive no special status or protection from the law. He places responsibility for coping with the world on the individual and criticizes all forms of state help for the mentally ill.

An opposing strand of thought within antipsychiatry is maybe most closely associated with R.D. Laing. Laing was influenced by a rather more sophisticated understanding of existentialist philosophy than Szasz's individualist libertarianism. Laing argued that people with mental illnesses such as schizophrenia were genuinely suffering and were in need of help. However, he was very critical of the medical solutions that were in use in the 1950s and 1960s, and he linked the suffering of individuals to both their dysfunctional families and the broader alienation inherent in modern society. He experimented with various attempts to provide people with psychological problems with more tolerant living conditions, although these experiments had little success.

The social model of disability has been set out by such theorists as Constantina Safilios-Rothschild, Gerben DeJong, Deborah Stone, Wolf Wolfensberger, Paul Abberly and currently advocated by well-known activists such as Colin Barnes and Tom Shakespeare. It is surprising to me, as a relative outsider to the field of disabilities studies, that the histories of the field pay almost no attention to antipsychiatric thinkers or even to the wider cultural movement associated with the criticism of psychiatry.

The most obvious parallels between a Laingian antipsychiatry and a social model of disability lie in the placing responsibility on society for its failure to accommodate itself to the needs to people with physical or psychological differences from the norm. In some interpretations of Laing, it is society or parts of society that in fact cause the psychological problems in the first place. A familiar example today of this sort of view would be the social valorizing of thinness causing young people to become anorexic. Another potential example would be if the alienation of modern capitalist societies cause depression and schizophrenia, as some interpreters of cross-cultural studies have suggested is the case. But the causal claim is not essential to the social model of disability. Whatever the original cause of the differences in the individual, on this model, society causes the disability in the sense of making it impossible for the individual to function as well as normal people. For example, a person who needs a wheelchair is prohibited from fully participating in society if public buildings are inaccessible to people in wheelchairs. When it comes to mental illnesses, it can be pointed out that more rural and more mystical societies are able to find a place for people who hear voices and who are not able to engage in normal social relationships. For example, they might be revered as having special mystical abilities, or they might be integrated into society despite their differences, rather than being locked away in hospitals or medicated with powerful tranquilizers. Our society, with its strong emphasis on the need to work in a conventional job and conform to rigid social norms, has no place for people whose behavior is unconventional or bizarre according to its standards.

A second, related parallel between some forms of antipsychiatry and the social model of disability concerns the medical status of the individual in question. In at least some forms, the social model denies that the differences of the individual need medical treatment. Similarly, in some of its extreme forms, antipsychiatry has denied that there is any such thing as mental illness or that the individuals in question need psychiatric treatment. It is probably this aspect of both approaches which causes most controversy -- whether it be the claim that deafness is simply another way of being in the world or that schizophrenia is not a disease but is rather a psychospiritual crisis.

While there are some people who still defend antipsychiatry in its most extreme forms, it is a movement that has basically died. In its wake are left two rather disparate groups. On the one hand there are academics who defend "critical psychiatry," which tends to be more sophisticated in its criticisms of traditional psychiatry, suspicious of its individualism, sexism, classism, racism, its medicalization of normal conditions, its alliance with the interests of the multinational pharmaceutical corporations, and critical of society for not making a place for people with mental illness. On the other hand, there are groups of patients, ex-patients and "survivors" of the psychiatric system which tend to advocate conspiracy theories, and condemn psychiatry wholesale. These groups have proliferated with the advent of the Internet. Neither group holds much appeal to the majority of people with mental disorders: the "critical psychiatry" movement is at a rather too abstract and academic level to be accessible to members of the general public, and the conspiracy theorists tend to be too far on the fringe and have nothing in terms of substantial help to offer. Furthermore, now with direct-to-consumer advertising and sponsorship of groups such as the National Alliance for the Mentally Ill in the US, the pharmaceutical companies have a powerful grip on the popular thinking about mental illness, and most people are led to believe that it has been scientifically proven beyond reasonable doubt that mental illnesses are disorders of the brain. Many conclude from this, with the implicit encouragement of the pharmaceutical companies, that the best treatment for the illness is medication. It is generally thought, with no good evidential support, that this approach will help to reduce the stigma associated with mental illness.

Given this situation, there is a great deal of room for a modest revival of an antipsychiatric approach taking its inspiration from the social model of disability. It seems to be a major error to insist that there is no such thing as mental illness, not so much because it is an indisputable fact that mental illness exists , but more because such a denial is going to alienate many people who would otherwise be sympathetic to some form of antipsychiatry. The real value of an antipsychiatric approach is to emphasize the responsibility of society to accommodate people with psychological differences and problems and integrate them into the fabric of everyday life. We can debate whether we should try to eliminate mental illness or to value it, and this is certainly an interesting question, but the current state of treatment is so far from curing mental illness that this debate will be of only peripheral concern to most people with mental illnesses. The best we can do these days is help to reduce some symptoms without causing terrible side-effects, and hope for spontaneous remission of the illness.

Thus, my final proposal is that there is a clear benefit for people with mental illnesses to identify as disabled in a political sense of adopting a social model of disability, and to see their problems as caused by society. The next step is to develop a clear understanding of what it would be to have a society that treated people with mental illnesses in a non-disabling way.

[1] Susan Wendell, The Rejected Body (Routledge, 1996) and her article "Unhealthy Disabled: Treating Chronic Illnesses as Disabilities" (Hypatia 16(4) 2001, pp. 17-33).
[2] See for example, Toyota Motor Manufacturing, Kentucky, Inc v. Williams, 120S. Ct. 681 (2002) concerning carpal tunnel syndrome, Bragdon v Abbott, 524 U.S. 624 (1998) concerning HIV-positive status. Excellent discussion of these issues is in Part B of Americans with Disabilities edited by Leslie Pickering Fancis and Anita Silvers (Routledge, 2000.)
[3] Lucy Johnstone, Users and Abusers of Psychiatry. Second edition (Routledge, 2000, pp. 231-2).

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