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Sweet Words that Hurt

The Make-Believe World of User Participation, Rights and Voice

McCubbin, Ph.D.

The mental health “system”

Many persons exercising or seeking coercive power in the name of mental

health care justify their actions by the supposed " lack of self-insight

caused by mental illness " . This is a circular argument because lack of

self-insight is often the psychiatrist's explanation for treatment refusal,

and then used to support the diagnosis of mental illness and the proposed

treatment. Inability of health professionals to recognize this false logic

and the catch-22 this puts people in displays quite a bit of lack of

self-insight!

In fact, lack of self-insight in mental health practices is so widespread,

so entrenched, that it is reasonable to conclude that the whole system lacks

self-insight. What do I mean by the mental health system? I mean much more

than health and social service programs, the workers in those programs, and

the patients and clients. The mental health system also includes:

• family members of patients and clients — who have powerful lobby groups

seeking policy and laws in the opposite direction from what user groups

themselves are seeking;

• professional associations — who try to enhance their professions' prestige

and power by enlarging their roles in directing mental health care and

treatment programs and policies and by increasing medicalization of their

practice (today social workers use DSM and psychologists are seeking

prescription privileges);

• pharmaceutical companies — who finance many of the professional and family

lobby groups and provide direct and indirect incentives (trips, conferences,

advertising in medical journals, continuing education, mental illness

screening campaigns, research funding) for psychiatrists and other

physicians to prescribe their psychotropic drugs;

• general public — who have difficulty imagining that they themselves could

at some point end up being a " mental patient " , and who have no sources of

information about psychological distress, and what to do about it, other

than the line of the family and professional lobby groups that " mental

illness " is a brain disease that has to be treated, perhaps forcibly, with

drugs or ECT, and that without such treatment the person could be

" dangerous " ;

• scientists, like myself — who are increasingly finding that they will not

find employment, research funding, or access to data, if they challenge that

line; with the result that scientific " knowledge " is at worst very biased

and at best increasingly geared to the questions that professionals, family

lobby groups, and pharmaceutical companies want to ask, rather than toward

what service users want to ask;

• and finally, and definitely last in terms of influence, the mental health

service users themselves — whose fledgling cooperatives, mutual support

groups, and self-advocacy groups are run with little or no money and are

simply not heard by all the other actors mentioned above.

Once we think about the mental health " system " as a social, cultural,

political and economic system — which is driven not only by love, caring,

compassion, scientific evidence, and good intentions, but also money, power,

prestige and other less lofty human motivations — then we can think more

clearly and realistically about the apparently enlightened and humanistic

discourse that those with power within the system have increasingly been

using.

Increasingly we hear that programs, practices, policies and laws aim to be

" participatory " , in " partnership " with users, " empowering " ,

" community-based " , " psychosocial " , and respectful of human rights.

However, we are far from achieving these objectives. Indeed, it appears

that these concepts have often been distorted into meaninglessness or even

into their opposites, as discussed below.

Empty rights

Not only have the rights of users — to autonomy, to dignity, to refuse

treatment, to informed consent — been systematically constrained by civil

commitment laws, by forced outpatient treatment laws, and by the legal

privileges and protections of the professions, but even those remaining

legal rights on paper are insufficiently, or almost never, translated into

meaningful practice. In some places people are not even informed when a

court hears a request from a family member to commit that person for

psychiatric examination, obviously making it difficult to contest!

Difficulties accessing competent lawyers or other advocates, and the kind of

counter-expertise that a court will listen to (particularly psychiatric)

make contesting civil commitment futile for many patients.

Furthermore, no matter how tight the law is supposed to be regarding

" danger " to self or others, in actual practice the decision to commit

depends heavily upon risks to mental health and hence " need for treatment " .

Need for treatment is too often based on the fact that a diagnosed person

declined the recommended treatment — which refusal suggesting to the

psychiatrist " lack of self-insight " which adds to the " proof " of mental

illness. Finally, it is anybody's guess how many forcibly treated persons

have at least had an independent assessment of competence and independent

and properly monitored proxy decision making processes that aim to decide

what that person would have decided if temporarily competent (the “pure best

interests criterion”); most likely, very few of them.

Coopted voices

The trend among mental health planners over the last decade has been to

adopt the discourse of democracy and inclusiveness. But usually this

discourse has remained symbolic, or worse: coopting users' voices — drawing

them into " cooperation " with the system and muting their opposition to its

disempowering features. Too often we have seen health authorities say that

they have " community participation " on their governing bodies — leading many

to assume that this includes user participation — when the " community "

persons are actually government paid health and social service

professionals. Or, if there is user representation it is token and the user

representative is snowed under by professional power, arrogance, agendas and

technocratic language.

At the larger level, the public and even health professionals, planners and

researchers believe or pretend that family and psychiatry lobby groups are

user groups or speak for users. For example, in Canada there was a national

consultation meeting for the establishment of a mental health research

institute; what was worse than the fact that there were no users present was

the fact that the organizers announced that there were, even saying so in

the consultation report. Incredibly, they confused user groups with the

family and psychiatry lobby groups who were there! Whether intentional or

not, such constantly repeated errors allow those persons actually privileged

to make decisions to justify them by the supposed participation of users.

What is worse than making someone else's decision, is to do it while

pretending that you are not.

Research to enforce rights and accountability

The above examples are only a few of the many indications of empty user

rights and coopted user voices that typical users experience on a daily

basis. In the scientific literature there is much talk about empowering and

rights-advancing programs and objectives but almost no serious attempt to

discover whether the rights attributed to users are actually enjoyed, or

whether the language of participation is more than pretence. Few academic

researchers will instigate such research, because it isn't users who pay for

it but governments and corporations. We need such research so that we can

hold programs and professionals accountable. It isn't enough for laws,

program descriptions, language and professional guidelines to talk rights

and participation. We have to walk the walk.

To ever be able to do so we need people who are truly concerned about the

rights, dignity and empowerment of users, whoever they are — members of the

public who are activists on rights issues, users themselves, dissident

practitioners and academics — to demand and get involved in research

ensuring that the sweet words of participation and rights are not a

substitute for action. Because, if they are, then the sweet words hurt —

they camouflage what is really going on.

An earlier version of this article was originally printed in The Rights

Tenet (quarterly newsletter of the National

Association for Rights Protection and Advocacy, http://www.narpa.org/ ),

Spring/Summer 2000, pp. 5, 8 and has been reprinted in 2001 by the Academy

for the Study of the Psychoanalytic Arts, www.AcademyAnalyticArts.org with

permission of the editor of The Rights Tenet, Dr. Bassman.

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[Guest guest]

http://www.academyanalyticarts.org/mccub1.html

Sweet Words that Hurt

The Make-Believe World of User Participation, Rights and Voice

McCubbin, Ph.D.

The mental health “system”

Many persons exercising or seeking coercive power in the name of mental

health care justify their actions by the supposed " lack of self-insight

caused by mental illness " . This is a circular argument because lack of

self-insight is often the psychiatrist's explanation for treatment refusal,

and then used to support the diagnosis of mental illness and the proposed

treatment. Inability of health professionals to recognize this false logic

and the catch-22 this puts people in displays quite a bit of lack of

self-insight!

In fact, lack of self-insight in mental health practices is so widespread,

so entrenched, that it is reasonable to conclude that the whole system lacks

self-insight. What do I mean by the mental health system? I mean much more

than health and social service programs, the workers in those programs, and

the patients and clients. The mental health system also includes:

• family members of patients and clients — who have powerful lobby groups

seeking policy and laws in the opposite direction from what user groups

themselves are seeking;

• professional associations — who try to enhance their professions' prestige

and power by enlarging their roles in directing mental health care and

treatment programs and policies and by increasing medicalization of their

practice (today social workers use DSM and psychologists are seeking

prescription privileges);

• pharmaceutical companies — who finance many of the professional and family

lobby groups and provide direct and indirect incentives (trips, conferences,

advertising in medical journals, continuing education, mental illness

screening campaigns, research funding) for psychiatrists and other

physicians to prescribe their psychotropic drugs;

• general public — who have difficulty imagining that they themselves could

at some point end up being a " mental patient " , and who have no sources of

information about psychological distress, and what to do about it, other

than the line of the family and professional lobby groups that " mental

illness " is a brain disease that has to be treated, perhaps forcibly, with

drugs or ECT, and that without such treatment the person could be

" dangerous " ;

• scientists, like myself — who are increasingly finding that they will not

find employment, research funding, or access to data, if they challenge that

line; with the result that scientific " knowledge " is at worst very biased

and at best increasingly geared to the questions that professionals, family

lobby groups, and pharmaceutical companies want to ask, rather than toward

what service users want to ask;

• and finally, and definitely last in terms of influence, the mental health

service users themselves — whose fledgling cooperatives, mutual support

groups, and self-advocacy groups are run with little or no money and are

simply not heard by all the other actors mentioned above.

Once we think about the mental health " system " as a social, cultural,

political and economic system — which is driven not only by love, caring,

compassion, scientific evidence, and good intentions, but also money, power,

prestige and other less lofty human motivations — then we can think more

clearly and realistically about the apparently enlightened and humanistic

discourse that those with power within the system have increasingly been

using.

Increasingly we hear that programs, practices, policies and laws aim to be

" participatory " , in " partnership " with users, " empowering " ,

" community-based " , " psychosocial " , and respectful of human rights.

However, we are far from achieving these objectives. Indeed, it appears

that these concepts have often been distorted into meaninglessness or even

into their opposites, as discussed below.

Empty rights

Not only have the rights of users — to autonomy, to dignity, to refuse

treatment, to informed consent — been systematically constrained by civil

commitment laws, by forced outpatient treatment laws, and by the legal

privileges and protections of the professions, but even those remaining

legal rights on paper are insufficiently, or almost never, translated into

meaningful practice. In some places people are not even informed when a

court hears a request from a family member to commit that person for

psychiatric examination, obviously making it difficult to contest!

Difficulties accessing competent lawyers or other advocates, and the kind of

counter-expertise that a court will listen to (particularly psychiatric)

make contesting civil commitment futile for many patients.

Furthermore, no matter how tight the law is supposed to be regarding

" danger " to self or others, in actual practice the decision to commit

depends heavily upon risks to mental health and hence " need for treatment " .

Need for treatment is too often based on the fact that a diagnosed person

declined the recommended treatment — which refusal suggesting to the

psychiatrist " lack of self-insight " which adds to the " proof " of mental

illness. Finally, it is anybody's guess how many forcibly treated persons

have at least had an independent assessment of competence and independent

and properly monitored proxy decision making processes that aim to decide

what that person would have decided if temporarily competent (the “pure best

interests criterion”); most likely, very few of them.

Coopted voices

The trend among mental health planners over the last decade has been to

adopt the discourse of democracy and inclusiveness. But usually this

discourse has remained symbolic, or worse: coopting users' voices — drawing

them into " cooperation " with the system and muting their opposition to its

disempowering features. Too often we have seen health authorities say that

they have " community participation " on their governing bodies — leading many

to assume that this includes user participation — when the " community "

persons are actually government paid health and social service

professionals. Or, if there is user representation it is token and the user

representative is snowed under by professional power, arrogance, agendas and

technocratic language.

At the larger level, the public and even health professionals, planners and

researchers believe or pretend that family and psychiatry lobby groups are

user groups or speak for users. For example, in Canada there was a national

consultation meeting for the establishment of a mental health research

institute; what was worse than the fact that there were no users present was

the fact that the organizers announced that there were, even saying so in

the consultation report. Incredibly, they confused user groups with the

family and psychiatry lobby groups who were there! Whether intentional or

not, such constantly repeated errors allow those persons actually privileged

to make decisions to justify them by the supposed participation of users.

What is worse than making someone else's decision, is to do it while

pretending that you are not.

Research to enforce rights and accountability

The above examples are only a few of the many indications of empty user

rights and coopted user voices that typical users experience on a daily

basis. In the scientific literature there is much talk about empowering and

rights-advancing programs and objectives but almost no serious attempt to

discover whether the rights attributed to users are actually enjoyed, or

whether the language of participation is more than pretence. Few academic

researchers will instigate such research, because it isn't users who pay for

it but governments and corporations. We need such research so that we can

hold programs and professionals accountable. It isn't enough for laws,

program descriptions, language and professional guidelines to talk rights

and participation. We have to walk the walk.

To ever be able to do so we need people who are truly concerned about the

rights, dignity and empowerment of users, whoever they are — members of the

public who are activists on rights issues, users themselves, dissident

practitioners and academics — to demand and get involved in research

ensuring that the sweet words of participation and rights are not a

substitute for action. Because, if they are, then the sweet words hurt —

they camouflage what is really going on.

An earlier version of this article was originally printed in The Rights

Tenet (quarterly newsletter of the National

Association for Rights Protection and Advocacy, http://www.narpa.org/ ),

Spring/Summer 2000, pp. 5, 8 and has been reprinted in 2001 by the Academy

for the Study of the Psychoanalytic Arts, www.AcademyAnalyticArts.org with

permission of the editor of The Rights Tenet, Dr. Bassman.

[back to Library]

_________________________________________________________________

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