Ideas on Madness, Society, and Creativity

CREATING WHOLE HEALTH AND QUALITY OF LIFE

Meghan Caughey

IT IS TIME TO CLAIM A NEW ROLE IN CREATING WHOLE

HEALTH AND QUALITY OF LIFE FOR EACH OTHER AND
OURSELVES.

PROBLEM:
As persons who have lived experience of having psychiatric
diagnoses, we have often been in the role of being powerless in
relation to persons in power who act upon us.

All too often, persons who administer mental health programs and
provide services have been willing to take power over those of us
with “lived experience” and decide what our needs and wants are.
They see us as unable to make wise choices that are for our best
interest and the good of society as a whole.
Too often this dynamic results trauma and creates pain rather than
healing.

Our part in it is that we have sometimes given our power away and
accepted compromises to our own human and civil rights. Many of us
who have had experiences of being hospitalized for mental health
reasons have never experienced any affirmative personal power
before in our lives.
We have played the role of “victim” to those who would exercise their
power over us.

Many persons and institutions in society see persons with mental

health issues as powerless victims. When we are viewed and view
ourselves as powerless, it fosters and perpetuates prejudice and
discrimination.

Analysis:

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As persons who have had psychiatric diagnoses, we have often
bought into the belief that we are not worthy or capable of
determining the best decisions for our health and well- being.
We have adapted to very limited, negative expectations of what kind
of lives we can live---limited incomes, inadequate housing, non-
employment, services that contribute to our lack of well-being and self
expression.

Mental health services that consist primarily of having our

“symptoms” treated seek to wipe out our unique viewpoints and
perceptions and diminish our creativity. Providers often see us as sick
and do not have strong affirmative expectations of what we can do
and be. We must not settle for being more physically sick and for
dying 25 years earlier than the general population. We all deserve
better and we must believe that it is ours to claim.
By simply trying to eliminate our so-called “symptoms,” the roots of
what makes us suffer are often left unaddressed, such as trauma in
our lives, and our health and uniqueness are squelched. Too often,
we have concurrent and/or resultant chronic health care conditions,
and lack empowerment, adequate knowledge and supports to self-
mange and effectively take charge of our health. We must find, use,
and share the tools that will free us from this bondage of sickness
and death.

The present systems of care too often insist that we must be in crisis
in order to receive care and support. In the public system, a person
having significant emotional or other life distress often must either
commit a crime or be seen as a threat to safety in order to receive
social support services. There is no systemic emphasis on preventing
crisis. The keystone of solution is peer support. It is a fiscal boon to
use this proven resource.
Prevention equals investing in people—peer support.
Prevention and prudence lies in investing in peers supporting peers.

There is an incorrect belief that persons who have lived experience of

mental health challenges are unable to make contributions to society
worth monetary compensation, especially when we are
having”symptoms”. The truth is that we can do gainful work that
contributes to our communities as well as helps us be free from the
entitlement systems that rob us of our power and drive down our self

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–esteem. We do not have to trade in our unique personhood in order
to work. That is a myth.
Those of us who have “lived experience” can work and retain our
unique personhood, and it can even be a source of what gives us our
edge in participating in a tight job market.
Being mad is not a deficit or a crime. We must change the thinking
that it is somehow wrong to be mad. We must be free to express
ourselves in whatever way resonates with our deepest, most whole,
genuine being. There needs to be increased tolerance and
compassion for all beings.
We need to change our society’s perception that persons who have
lived experience of mental health challenges are outside the context
of the larger society. Persons who have lived experience of mental
health challenges are a valuable and vital part of the texture of
humanity. It is possible and necessary for those of us with “lived
experience” to relate to people and institutions, communicating our
visions and contributing to the overall vision and action of society.
Many persons with lived experience of psychiatric diagnoses live in
situations that negate our sense of dignity. We have often ceased to
be in touch with our dignity altogether, while being treated in ways
that drive us into low, fearful conditions.
This must change at all levels!
As persons who have had psychiatric diagnoses, we must hold our
dignity as being intrinsic to who we really are and insist that all people
around us recognize and uphold our dignity.

CHANGING THE STAUS QUO:

Let those of us who have had lived experience of mental health

issues come in from defining ourselves as “outsiders” by bringing the
“outside” into the decision-making rooms. This does not have to
mean being “co-opted” or being “bought out.” Our rallying cry has
been,” Nothing about us, without us!”. We must make this a reality
and make it true on the largest scale of decision-making in our
societal systems. We must be willing to do the hard work to evolve
and demand the rallying idea of “Nothing without all of us, and we
mean with all of us!”

We persons who have “lived experience” must be willing to step up

and do what is necessary to be part of the policy and decision-making

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process for issues that affect us and that define our society.
We must bring our “peer values” into the decision-making arena, as
they are one of our biggest strengths--- inclusivity, the respect for
diverse and unique visions and strengths, finding unity while
embracing diversity, and the willingness to give aid to each member,
valuing each member of our world, fostering a range of contributions
and expressions. We do not have to compromise our vision—we
need to learn to better communicate and share it with others.
One way to do this is through artistic means. Art is one of an array of
important tools for communicating who we are, what we want, and
what we can do to contribute.

We must create and develop a range of tools for communication,

so that all of our voices are heard.
I would suggest that we who have had lived experience of being
consumers of mental health services move from seeing ourselves as
mental health consumers/survivors to being mental, physical “full-
spectrum health” creators.
I would suggest we call ourselves mental health creators, or simply
“creators “for short.

There is enormous creation and good that we bring to society.

Let those of us with lived experience of mental health challenges take

charge and demand for ourselves the dignity that we desire and that
we all deserve.

Let us support one another in discovering and expressing the

deepest reality of who we are, as creators, and demand that there is
a range of opportunities for “peer- run” peer support.

Let us communicate our abilities and strengths to society and

demand that we be valued as we join in growing, creating and
affirming the evolution of the best of the great body of humanness.