Changing Language – A Plus ¼ Or Not?

by Sandra Hooten, Peer Advocate

The language of mental health treatment is morphing into words that are sensitive, polite, caring, and respectful of all our concerns. This is a positive change. At the same time, we must recognize that political correctness can stall progress. Meanings stay as they are underneath the language.

Person-centered planning, individual service plan, recovery-focused services are a few of the many terms being adopted by new structures in the mental health service delivery plans. For more than 20 years, peer advocates have fought for individual empowerment, choice, hope, and sensitivity in treatment services. If practices follow the language, peer advocates are due credit for their influence. Western New York providers and systems are working diligently to put this new language into measurable practices.

A May 3, 2003 report from the Board of the International Association of Psychosocial Rehabilitation Services (IAPSRS) goes further in examining treatment and recovery language. It is easy to see that a lot of thought, caring and work went into this project. Recommendations are made with good intent. Words, however, do not change reality. Sometimes political incorrectness is needed for true change to occur.

IAPSRS says the intent of adopting this language is to change attitudes. This is a chicken and egg theory because some believe attitude change has to occur first. I don’t know. But it is cause to listen carefully. When we place comfortable words on unacceptable practices to relieve fear or guilt, we sell out the individuals still enduring those practices.

In the language of the IAPSRS paper, the term “consumer” is improper. Many of us say the same thing. The stated definition gives me second thought. “Consumer means a person who buys goods or services, yet most people who use psychosocial rehabilitation services do not purchase these services themselves, and often are assigned to a local service provider. Choice has been rarely, if ever, built into the mental health service system.” This means that the “consumer” is not the customer. The insurance company, funding stream, or referral source is the real customer. Those are the parts that need change. I will gratefully remain a consumer to remind service providers that I have the right of choice. The report recommends using “person” or “member.” I think it is easier to refuse a service than to withdraw a membership.

Although the term “peer” is not in this paper, it refers to “practitioners in recovery” to signify “someone who is recovering from mental illness and providing services.” The word “practitioner,” if ever used for working peers, would not bring the relief to an individual that he or she has when able to talk with a peer of equal standing.

Recommendations regarding the use of diagnostic terms rightfully take the reader away from describing a person as “schizophrenic,” “bipolar,” or “borderline.” Saying “a person diagnosed with¼.” is less stigmatizing, but the focus remains on diagnosis. Whereas a person living with a diagnosis of¼..” places life first.

“‘Stigma’ is defined as a mark or evidence of shame that is intrinsic to a person, and which often is used as justification for discrimination¼.” We are not the initiators of stigma. We know that stigma comes from the label of the diagnosis and ensuing treatments. The system’s need to group and classify us causes social stigma. The paper suggests using the word “discrimination” in its place. The definition of the word “discrimination” states that “discrimination makes a distinction in favor of or against a person, based on the group or category to which the person belongs.” The lesser term avoids reality. We live with both stigma and discrimination. Failure to acknowledge imposed stigma ignores our extraordinary strength in overcoming it. Anybody can coat bitter fruit with sugar. Once bitten, it is still bitter. The word stigma should go away, if the practice of stigma went with it. We are a long way from that.

Coupling these recommendations with the new catch-phrase “recovery is recovery” illustrates how easily the importance of our experience can be diminished. Experiences of the indignities imposed by harsh treatment practices and restricted social environments are our unspoken bond. The hardships, rewards, and skills of recovery from these experiences are the tools we use in supporting and advocating with our peers.

The use of inclusive, non-derogatory language is a huge step forward for the system in recognizing persons living with diagnosis as individuals capable of decision making and independent living. It sets up a standard for accountability, but it also could lull us into a sense of security that diverts us and society from our mission to be full-fledged community members. We cannot forget the source of our passion and drive is who we are and what we have endured.