Kathryn Cohan Personal, Family, and Community Strategies
to Enhance Consumer-Direction and Self-Determination

Personal Strategies:

Persons with mental illness need opportunities and encouragement to make choices. The personal and social experience of mental illness often leaves a person feeling inadequate to make even the smallest decisions... a person's "chooser" must be exercised or it is lost.

Persons with mental illness need the experience of having relationships with others who are also diagnosed with mental illness, to mitigate against isolation, provide encouragement, and benefit from the wisdom of others who have made the journey. People with mental illness need people in our lives who see us as *whole* people, not labels.

Persons with mental illness need help figuring out how these diagnoses are expressed uniquely through us, and need the freedom to have the result of this investigation be okay. We need to be encouraged to find ways to make peace with our differentness, not devalue or pathologize it, and to recover our self esteem along with our sanity.

Persons with mental illness need support and assistance with finding real meaning in our lives. Too often the experience of being labeled with a mental illness relegates us to rehabilitation efforts that promote the adoption of a life that goes through the motions of mirroring someone's idea of a "normal" life, without regard for the plain integrity of a life lived with extreme states.

Family Strategies:

Family members must understand that their experiences are intrinsically different from those of their relatives. Families must complete their own grieving of their own expectations for their relative, and move on to support their loved one's capacity for transforming the experience of having mental illness from one of grief and loss to growth and gain. Family members must sustain a sense of hope and optimism about who their relative may become, and support their relative as she or he works to integrate their new experiences into their self-concept, in order to develop a positive sense of self based on new experiences, understandings, and knowledge.

Family members need be cautious about using their loved one's diagnosis to gain admission to the special club of "family members of persons with mental illness," as this confines their loved one to performing a role in the family unit that is static, as opposed to the dynamic role(s) assumed by persons who are not the designated sick one in the family.

Family members must encourage and support their relative's efforts at finding their own optimum level of independence in a fluid way. Family members must ally with their relatives in a positive way that accommodates the fluctuations in functioning contained within the experience of mental illness; while honoring their relatives' capacities for self-sufficiency and agency.

Family members need to echo the concerns of primary consumers. Family members must not -- except by invitation in the form of an advance directive for health care -- substitute their own judgement for that of the person with the mental illness. Choice should be respected and preserved at all costs.

Community Strategies:

Safe, integrated, and affordable housing, accessible and affordable transportation, meaningful work and service to the community, and a variety of recreational activities afford basic opportunities for self-determination and self-direction.

Communities must make personal accommodations that are highly individualized, as there is neither "one true way" to be a person with a mental illness nor "one true way" to respond to persons with mental illness. Perception, cognition, and feeling are involved both in problems of living and remedies that may afford an improved quality of life. Individual sensitivities, preferences and capacities must be considered, as they are both intrinsic to the experience of having mental illness and central to any successful efforts at improving the quality of our lives.

Good communities must be scrupulous in their respect for the rights of persons with mental illness to live unmolested in the quiet, comfort and privacy of living situations of our own choosing. Persons with mental illness have the same civil rights and responsibilities as persons without mental illness, and communities must always respect this fact. Special laws predicated on what an individual _might_ do rather than what a person _has done_ are an absolute violation of the most basic of our rights as citizens.

Good communities move beyond tolerance and embrace the diversity afforded by the citizenship of persons with mental illness.

Refraining from exceptionalizing the experience of its mentally ill citizens is the best practice of any community. We are people, not labels.

Barriers:

The biggest barrier to overcoming the obstacles in the path of implementing these suggestions is discrimination. The experience of having a mental illness is so saturated with discrimination that we have a special name for it, and that name is stigma. Stigma keeps people with mental illness in isolation, and while we can no longer be shut away in institutions, we are daily shut off from the mainstream of life.

The stigma of mental illness has two parts.

The first is cultural. We have culturally-transmitted ignorance and fear at work in the social perception of persons with mental illness. These myths have not been helped by ideas like "broken brains" and "brain disorders" that serve to reinforce the idea of persons with mental illness as less than whole and in need of fixing. In this arena, mental illness is no different than any other disability. There is no template for living with mental and emotional difference that, at least, permits it and, at best, values it.

The second is personal. The internalization of the negative cultural messages (not to mention the shabby cultural treatment of persons with mental illness) has lead to an expectation among persons with mental illness that discrimination *will* come along with the territory of having a mental illness. In other words, stigma -- or shame -- is an anticipated and accepted side effect of having a psychiatric label. This side effect is devastating, as it leads to loss of self-esteem, self-trust, self-image and self-care.

Combating the depth and breadth of discrimination must be the first line of attack for this problem. Persons with mental illness are challenged daily in extraordinary ways to lead extraordinary lives. And, sadly, this sort of heroism daily goes unnoticed by a society that views us as less than human.

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[Who am I now?] [Strategies for Self-Determination] [Talking Points]
[Inner Science] [The Hard Questions] [Provider Psychopathologies]
[Inviting In The Wolf] [Recovering Self Esteem] [The ECT Suite]
[Consumer Satisfaction Surveys] [The Therapeutic Value of Cyberspace]
[The Self-Help Lens] [The Language Barrier] [Waves of Change]

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© 1999, 2000 Kathryn Cohan