At NAMI, we seek to improve the lives of those with mental illnesses and their families. We do this through education, support and advocacy. Part of advocacy is changing laws, and also public attitudes. Every civil and human rights movement has had to do both to make progress.
The mental health movement has increasingly used the word “stigma” to describe the negative public attitudes towards people with mental illnesses. It’s short and easy to say. By definition, it’s a mark of disgrace, a negative stereotype. People with mental illness have said that stigma, how people judge them, is a barrier to a full life. Even the 1999 US Surgeon General’s report identified stigma as one of the greatest barriers to seeking treatment.
But perhaps it’s time to use the word “stigma” more sparingly, if at all. In reality, what people with mental illness are facing is not stigma, it’s discrimination. If you believe as I do that NAMI is a movement, a civil and human rights movement, we need to start saying the word—discrimination—more often.
If people were having heart attacks and there were no beds available in the cardiac unit, would more beds be built? If a public health issue caused over 45,000 deaths in a year in our country and the rate kept increasing would it be called a crisis? The answer to both questions is simple: yes. And yet this is happening in our mental health system and the response isn’t fast or thorough enough. It’s not stigma, it’s discrimination.
The word “stigma” doesn’t truly reflect people’s experiences with discrimination in housing, education, employment and health care. It’s not stigma that has resulted in people boarding in emergency rooms. It’s not stigma that has resulted in public and private health insurance not covering needed mental health treatment and services. It’s not stigma that has led to so many people with mental illness ending up in the criminal justice system. It’s not stigma that causes so many people to be unemployed. It’s discrimination.
The word stigma doesn’t reflect the horrible impact of stereotypes that ridicule and make fun of people with mental illness. It doesn’t expose the seriousness of negative words to describe people such as “crazy” or “nuts.” No other health condition has slang words to describe it. It’s easier to dismiss people when we use these negative slang words to describe them. Brene Brown wrote that dehumanization starts with language. So, let’s not say that these words are stigmatizing, let’s say they are dehumanizing.
To continue our progress, we need to claim what people are experiencing as a civil and human rights issue and demand an end to discrimination. We need to encourage people to share their stories in order to blast stereotypes, break the silence and document discrimination. As more people share their stories, we build a larger movement.
It’s time to start using the word “discrimination” more often than “stigma” to change the very laws and policies that have those with mental illness and their families without access to treatment and services. To end the discrimination, we need to call it what it is.
Sue Abderholden, MPH, has served as the executive director of NAMI Minnesota for the past eighteen years, devoting a great deal of time and energy towards changing laws and public attitudes. She has received numerous awards for her advocacy on behalf of people with mental illnesses and people with disabilities. Sue held a foster care license providing respite care for children with disabilities and those aging out of the foster care system and has family members who live with mental illness.