I was asked by many people that I told ‘I gave a service on stigma at my Unitarian Universalist Church’ what that meant. Our religion has often used lay-leadership to deliver meaningful messages when the acting minister is not in the pulpit. This was a service I first gave at the UU Congregation of Miami in 2012. It was updated and given at the Unitarian Universalist Congregation of Marin, in San Rafael California.
STICKS & STONES & STIGMA
Hello, My name is Julie and I have a mental illness…Today I am sharing my own experience of stigma, labeling and stereotyping with the hope that my sharing can help others. Disclaimer: There are many different discriptive words I use today and my preferred words to describe my own situation are “Mental Health Challenges.
Our first U.U. Principle celebrates the “Inherent worth and dignity of every person”. We hopefully believe in this and put it into practice in our daily lives. We are also beginning to realize the tremendous power of words to hurt. There have been more and more stories in the media about anti-bullying campaigns and the damage of hurtful words bullies use. Our childhood rhyme: “Sticks and stones can break our bones, but words can never hurt us” has proven false. Research reveals the possible terrible consequences of using hurtful language against children. Now we can see that for some of our most vulnerable people words can create terrible personal pain, possibly cause suicide attempts and may even result in death. Far from most typical characterizations in the media, persons with mental health issues are not the perpetrators but most often the victims of violent crime. Still, the WORDS used to describe mentally ill persons and media portrayal of those persons as dangerous or violent often color our view of them. That ‘color’ becomes stigma. Here is one definition:
STIGMA – 1)“a mark or stain” 2) “a sign, of infamy, disgrace or
Stigma can be perpetuated by the use of attaching a LABEL. We have such a large number of negative and hurtful words in our language and embedded in our culture. Words like: “that person is schizo”, she’s “loony”, he’s “round the bend”, they’re “so OCD”, etc. I bet you could name 10 of these words or phrases, some that you use all the time. These have become such a part of language that we say them without thinking. Also, once a group of symptoms are given a name and identified it becomes a label to attach to people. So, to call someone a ‘cancerite’ or a diabetic would be labeling that person as a diagnosis. This action can perpetuate the stigma a person experiences. Sometimes, the very people who are supposed to be assisting us with mental health diagnoses can increase the damage by the words they choose.
This quote is from Dr. Pat Deegan, a person diagnosed with schizophrenia who has become a famous researcher in the field. It is titled “Recovering our sense of value after being labeled mentally ill”.)
“Whereas before being diagnosed I was seen as a whole person, after being diagnosed it was as if professionals put on a pair of distorted glasses through which they viewed me as fundamentally ill and broken…it seemed that everything I did was interpreted through the lens of psychopathology…What mattered most to psychiatrists, social workers, nurses, psychologists and occupational therapists was that I was a schizophrenic. My identity had been reduced to an illness in the eyes of those who worked with me. It was only a matter of time before I began to internalize this stigmatized and inhumanized view of myself.”
I myself have been in several situations with other ‘professionals’ where my “label” was discussed and words like “those Borderlines” were used. This was terribly uncomfortable and made me want to leave that workshop even when I was attending as a paid professional. My belief: labels are for soup cans and t-shirts, not people. Now that we have heard of the potential harm we can do to those with mental health challenges (and often those people are ones we love, we work with, who are our parents, our children.) How can we change this situation? How can we honor that “inherent worth” if we use words to perpetuate the stigma?
Although increasing awareness and action to decrease use of hurtful words are taking place and we are becoming more educated, we still have a long way to go when it comes talking about mental illness itself. There is still considerable stigma attached to receiving or having a psychiatric diagnosis. People who readily disclose that they have another illness such as cancer or diabetes are much more likely to be silent if the diagnosis involves a mental disorder. Even now as TV ads are littered with names of antidepressants, mental illness is still very much in the shadows. In part, this is because of fears that talking candidly about having psychological problems will have unwanted social or occupational consequences. People that are truthful could be turned away, shunned, passed over, marginalized or maltreated. And the pain and suffering caused by stigma can be huge. This aspect of stigma leads to under-reporting the numbers of mentally ill persons in the general population, and to untreated or misguided treatment of illness that can damage a person’s life.
For over a hundred years medical professionals in this country believed that “schizophrenics” could not ever recover. People who had family members that they called “crazy” would ask doctors what they could do. The answer often was that they could do nothing. That their loved ones could only be a burden to society, and that they should remain in institutions and isolated from that society.
Views began to change gradually and in 2003 the President’s “New Freedom Comission on Mental Health” encouraged deinstitutionalization of persons with a mental health diagnosis in America. The phrase “least restrictive alternative” was created. Many large state hospitals inhabited by ‘chronic’ mentally ill people were closed. This was intended to release patients back into the community, where they could re-enter society by living in group homes, attending day treatment options, join club houses where they could meet. There would be places that would train them to perform jobs and assist in job placements, teach living skills that would aid their re-entry back into society. This plan proved successful for some mentally challenged people who left institutions and found a recovery path in their community and had assistance along that path.
But in our recent economy, with spiraling health care costs, the reality of the lack of health care options has made situations for many much, much worse. Mental health clinics too far away to access, too few doctors or therapists to go around are the norm across the country. Few community resources, lack of treatment or poor treatment caused many to fall through the cracks, sometimes resulting in homelessness or incarceration.
“I KNOW THEY..”
Another component of stigma is the use of stereotyping. Stereotypes are automatic beliefs or assumptions about a group of people based on knowing one (often trivial thing) about them (e.g. people who wear glasses are smart.) Because we may have heard about certain behaviors that can possibly accompany mental disorders, we may automatically and incorrectly infer that this will be true for any person we meet who has a psychiatric diagnosis. This can be heard in common statements like “people like you can’t work”.
Yes, I was actually told by a psychiatrist “You probably won’t be able to work, you should just go on disability”. Think about your own automatic assumptions about people with mental illness: they are not competent, they are dangerous, they are unpredictable, they are just looking for attention or they just need to “pull themselves up by the bootstraps”.
Once, in a hospital, a mental health worker said: “Wow, you are using this place like a revolving door”. The inference that I was ‘using’ the hospital by choice, that I wanted to return there repeatedly was so horribly unfair. It still stings today to remember those words.
Data shows that these stereotypes are often completely faulty. We know now that as many as one in five persons will experience some type of mental health challenge during their life. It is very important to remember: people with a diagnosis of mental illness have gone to ivy league schools, become presidents, gotten their doctoral degrees, are artists, scientists They have married and raised families.
1. Abraham Lincoln
2. Patrick Murphy
3. Britney Spears
4. Brooke Shields
5. Carrie Fisher
6. Mike Wallace – and –
7. Angelina Jolie
8. Brandon Marshall
We have learned about their secret. Now they are ‘outing themselves’. They are taking the ‘skeletons’ of mental illness out of the closet. They are proof that WE can recover and do recover, whatever recovery looks like for US.
“I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide.”
― Kay Redfield Jamison, a psychologist and author of ‘An Unquiet Mind: A Memoir of Moods and Madness’
Today there are person-first language initiatives: using descriptions like ‘he is a person who has diabetes’, ‘she is a person with cancer’, ‘he has depression’. These words are being used more and more to describe cultural, racial and religious and sexual differences appropriately. Now we can add those with mental health challenges to that list. Remember that they are our co-workers, our children, our parents, our partners and friends or classmates. The myth that people with psychiatric illness (and I use those words carefully) are ‘disabled’ is false. But this myth is still being perpetuated by professionals, media and by our society, and by ultimately by ourselves.
The good news: today there new laws are requiring parity for mental health services. Health insurance plans can no longer turn away members with ‘pre-existing conditions’. Also, Congress has recently passed H.B. 2646 which hopefully will target stigma against those with mental health crises, and bring mental health care to many who desperately need it.
WHat can we learn and how can we change things? Begin by learning that jokes about mental illness are not funny to the people that experience it, their families or their trusted friends. Adopt person-first language when referring to those with mental health challenges. Use respectful language when addressing or discussing people at all times. Do not be quick to judge those around you, who may be struggling with or recovering from an invisible mental health issue. If you are not aware of what the labels mean or are not sure about stereotypes, ask questions, get up-to-date information and examine your own thoughts and feelings. Lobby your elected officials, share information and act to assist people instead of victimizing them.
There is a huge amount of information to gather, research and explore. “Sticks and Stones” can hurt so many ways, BUT I believe that words can also heal. By using respectful, accurate and inclusive words we can work to celebrate the inherent worth of all people.