Understanding the Georgia Advocacy Office’s Position About Institutions

Our response to the AJC series “A Hidden Shame: Death in Georgia’s Mental Hospitals” is to be horrified as everyone else is. Below is our response to the information presented in this series.

Understanding the Georgia Advocacy Office’s Position About Institutions

To Our Friends in the Disability and Mental Health Communities

From its inception, the Georgia Advocacy Office has been committed to inclusion, normalization and community living for all people. Our unwillingness to support, maintain, improve, or endorse institutions has caused some of our colleagues to criticize us or accuse us of being unrealistic. We would like to explain our reasons in the hope that even those who do not agree with us will understand our thinking.

Our philosophy is based on the history of institutions and social service systems. That history spans centuries and cannot be reflected briefly, so we must rely upon being able to explain its lessons.

When a person must depend on others for routine care and support, the ability to be safe and well in the world rests upon being in relationships with people who care about the person on a voluntary basis, as people do in families and close communities. In a personal loving relationship, the person needing care is voluntarily given power over the care provider by the care provider himself.

When the social bonds of protection are replaced by systems of paid care, the paradigm shifts, leaving the person in need without the deep lasting commitment of voluntary association and familiarity. The person in care becomes most essentially the object of work rather then the object of love.

When people in care are isolated from community, segregated in institutions and congregated with others also needing care, a further shift occurs that identifies those in care as “less than” those providing care, by virtue of the incapacity of one and the capacity of the other. A power differential emerges between care givers and care receivers; therefore, abuse and neglect become inevitable, regardless of intentions. This is not a matter of morality of people providing care. It is the consequence of segregation, congregation, and unequal power.

Our belief that institutions inevitably do harm, through no fault of the people associated with them, prevents our supporting institutions. Our confidence that realistic non-institutional options exist for people with disabilities and mental illness will not allow us to contribute to the continuation of institutions.

At the same time, we never support reckless discharge of people from institutions but insist upon responsible planning and adequate support for each person in community. We also honor choice as the cornerstone of dignity and freedom. We therefore accept the decision of a person who wishes to live in an institution, but we do not assist people in becoming institutionalized, except in the most extraordinary cases. To do so would be to participate in perpetuating the very systems of institutions we hope to see replaced.

Some people think that institutions surely will be with us for a long time, and so we should work to make them better. Some people even say that is our duty.

We answer that we do not believe the fundamental problem with institutions can be corrected. Conditions that appear susceptible to improvement are only symptoms. Symptoms may fade temporarily, but they will always reappear as long as the underlying causes persist. Efforts to improve institutions therefore inevitable fail, in our opinion and in our experience. Having limited resources, as all things do, we feel obliged to them in ways that offer long term prospects of success.

Some people say we should at least lend our name to efforts by others to improve institutions. We answer that we must speak clearly if we are to be understood. Our message is that people need to live outside of institutions. Having our name associated with institutional reform obscures and compromises that message.

Our position is shared by many in the disability and mental health communities across the country. People with disabilities themselves and organizations they truly control most often agree with us. Organizations of families, professionals, public employees, and political systems invested in institutional support often do not agree with us. We believe they will in the future.

Some people say we are insensitive to people with severe disabilities that require around the clock care, or to families worried about stability of care for their loved ones when they are no longer able to assist them. We hear their voices and are drawn to their sides. Nothing in our philosophy disrespects their feelings or their fears. On the contrary, we share them.

The difference is that we have seen systems in committed communities that serve the most severely disabled people without institutions. We have been with people who live in houses who cannot speak, walk, or participate in one task involved in their own daily care. We have seen such people live in conditions as close to those of typical people as possible, even when they have not had families to look after them.

We have learned that the apparent stability of institutions is purchased at a high price in human misery: a price that need not be paid. We know that we can have a system that is just a stable and entirely community based.

Imagine all of the money being spent on our institutions being diverted to build strong person to person networks of support for individual people in communities. Places like that exist. When people say we are not realistic, we say they have not seen what we have seen: places where things are done differently because most of the people came to believe as we believe in GAO. In those places, life is truly better for people with mental illness and disabilities. That is why we will not change our message or compromise its clarity. We need to listen to what people tell us when they actually have a real choice. No one wants to or needs to live in an institution.

This article was first printed in the February 1997 edition of “The GAO Advocate” and is still relevant today.