Beware the Word Police

Providers and advocates agree: stigma significantly limits life opportunities for people with mental illness (1). Words may make it worse. Calling a person “schizo” or “psycho” only fans the flames of stigma, leading to prejudice and discrimination. Hence, being vigilant to such harmful words, and reacting accordingly, may be important steps in decreasing stigma. I think, however, that this “fix” is fraught with unintended consequences caused by “word police”—advocates who identify the inappropriate use of terms related to mental illness and scold those who utter them in an effort to stop stigma. This Open Forum reviews three unintended consequences of this action. First, though, I clarify concerns about language and stigma.

There have been frequent calls for word change with the intention of decreasing stigma around mental illness. For example, psychiatrists have argued for changing the diagnostic term “schizophrenia” to less stigmatizing alternatives, such as Kraepelin’s disease or Bleuler’s syndrome (2, 3), because the current label evokes prejudice and discrimination (4, 5). East Asian professional associations have been especially active agents of diagnostic relabeling to decrease stigma (6). A survey of Japanese psychiatrists suggested that the new terms for schizophrenia implemented by their association facilitated enlightened education about the illness and psychosocial interventions, although this study was reported as part of a larger review and hence lacked specifics about the method (6). Ongoing research is needed to better determine how relabeling decreases stigma.

“Stigma” has been tagged as a harmful word in its own right, for its capacity to equate the act of labeling with blaming the person with the label (7). Preferred language, according to this perspective, would refer to the prejudice and discrimination associated with mental illness, rather than the stigma. The Substance Abuse and Mental Health Services Administration has gone so far as to ask that “stigma” be struck from the government lexicon (8). One might think consensus could be reached regarding appropriate words. Empirical research, however, has been unable to find consistent agreement among stakeholders on the appropriate terms to refer to people with mental illness (9, 10). I thought that “person-first language”—for example, “people with mental illness”—was an especially sacrosanct term that both advocates and researchers alike would endorse to diminish stigma. Surprisingly, however, person-first strategies have been criticized as accentuating the disability label rather than promoting full and unique identity (11).

Consider this example of the unintended effects of the word police. I consulted with a well-meaning and energized group seeking to develop an antistigma program in a western state. I met with the members after four prior meetings, during which they tried to articulate their vision and mission and found themselves stalemated. “What do we call ourselves?” Some thought the issue was stigma and “mental illness.” Others recoiled at “illness,” suggesting that the medicalizing connotation of the term undermined the personal experience of mental health challenges and threatened notions of recovery. They preferred “mental health challenge.” The group further worried that if they could not agree on appropriate terms, how might they correct citizens who might err? Their raison d’être had been derailed by a protracted argument over correct words; they were far away from making decisions that would ultimately correct the injustice of their concern.

Word police have hijacked the antistigma agenda and generally adopted one of two tones. Some of them might be benevolent, seeking to enlighten the misguided individual about the appropriate words to use. Others might admonish, scolding the individual who persists in using stigmatizing words. Either way, word police do not see that debates like this bring productive discussion to a halt. This lack of insight leads to three unintended consequences.

Three Unintended Consequences

First, the word police’s focus on “just changing terms” misrepresents the depth and persistence of bias and bigotry. As one respondent said, “I don’t know what you call it. Schizophrenia, Kraepelin’s disease, or Bleuler’s syndrome. And I don’t really care. They’re nuts and dangerous and need to stay away from me.” Condemning hateful slurs of African Americans, women, and the LGBTQ community has not eradicated racism, sexism, or homophobia. Perhaps specific language can be suppressed in tightly controlled settings with vigilant word police (e.g., “no one in my psychology class may say ‘schizophrenic’”). But suppression of words in a setting does not correspond to accepting the value that suppression is meant to represent. It just teaches students not to say “schizophrenic'” around their professor. Nor does vigilance in the classroom extend to the university at large or the community beyond. Instead, this policing of words might foster an incorrect sense of the ease with which stigma can be erased: that changing the words is enough. Unfortunately, changing stigma is a much more protracted and difficult task.

Second, and of more concern, word police are a major barrier to the essential goals of stigma change. As one advocate said, “I don’t really care what people say about me. But they must stop discriminating against me—stop undermining my work or independent living goals.” Erasing words is not enough. Stigma needs to be replaced with affirming attitudes of recovery and empowerment, which in turn lead to real-world improvements in opportunity. Research has shown the worsening effects of antistigma programs based on a list of don’ts: “Don’t talk about ‘schizos,’ ” or “Don’t say ‘crazy,’” or “Don’t write about ‘mentals’!” (12). Of course, these are disrespectful terms worthy of an advocate’s protest. But protests to quash these terms rarely change behavior and sometimes lead to rebound effects. Telling someone not to think something may actually increase the prevalence of that thought (12). To make matters worse, the naïve public is likely to dismiss this kind of barrage as political correctness, once again derailing real antistigma efforts.

As a result, the work of word police undermines allies. Instead of engaging people in the hard work of prejudice-busting, word police are alienating potential partners. We must keep our eyes on the target. There is little need for us to include like-minded people in the antistigma charge, individuals reading this piece and nodding their heads in agreement. We want to engage those who do not see the problem. Nor is the target obvious; rare are people who see themselves as bigots waiting to cede their prejudice about mental illness to the use of more respectful terms. We wish to influence employers, landlords, teachers, faith-based leaders, health care providers, and legislators, whose decisions are central to goals of individuals with mental illness, in order to replace their stigmatizing attitudes with ideas of recovery and empowerment.

We probably have one attempt at it. The public is not an empty vessel waiting to replace its biases with affirming attitudes. They are juggling other life priorities against additional social justice concerns: immigration, gender roles, poverty, and racial-ethnic discrimination, to name a few. The public also has limited information capacity to absorb the panoply of important messages bombarding them. People cannot consume endless material, regardless of its importance. Scolding the public about language use squanders an opportunity to more effectively eradicate stigma.

Third, word police may undermine stigma change at the policy level. Whether the word officer does this benignly or with furor, the assumption is that stigma is corrected when words disappear. In making this process look easy, antistigma efforts gravitate to facile interventions such as public service announcements that blast correct words across social media (13). Unfortunately, this distracts policy makers who fund these enterprises from promoting the grassroots, day-to-day work that produces real changes in personal opportunities. Canada seems to have embraced this preferred agenda in its Opening Minds program. Opening Minds quickly abandoned the simple fixes of public service announcements condemning taboo words and instead invested in local programs (14). These programs manifest as education and contact strategies led by people with mental illness to change their communities to embrace visions of recovery and empowerment (1). This approach echoes the conclusions of the systematic review by Lasalvia et al. (5): the use of word change strategies needs to parallel strategic evolution in legislation, services, and public education.

Conclusions

Of course, it is not okay to say “schizo,” “psycho,” or “nuts.” Research suggests some benefits of changing word usage; hence, carefully constructed research is needed to tease out the relative benefits of word change. We want to avoid a false dichotomy that simplifies word change to a risky enterprise that should be avoided altogether. Instead, we want to promote a comprehensive plan that integrates word change efforts with attempts to mold legislation, services, and education into approaches that ultimately diminish stigma.

In the process, however, we need to be mindful that readers herein are the choir. Our effort needs to be focused on the members of the public who do not really care about stigma and will turn attention elsewhere when browbeaten instead of engaged. Perhaps the righteous person might read this and conclude that at least word police do not cede their moral compass. Yet having worked in the stigma world for 20 years, I realize the moral wrongs that define stigma are not black and white. Until they are, I urge strategies that get people into the tent working with us rather than placing barriers on progress. Beware the word police.