I am writing this blog on the second anniversary — September 24, 2019 — of my son’s death. As a form of personal therapy, my hope for posting it is to escape my own feelings of incalculable loss. But just as strong is my desire to open my heart to others out there who, like David, are marginalized, stigmatized and far too often ignored — people with mental illness.
I want to send out to them a heartfelt and unwavering message of hope and to assure them they need not feel alone. This is what our new Canadian charity, BIRDSONG — David Martin New Music Foundation, is about.
After the devastation any parent feels with this kind of loss — the numbing grief — my son is now ushering me through a secret passage to mend my broken heart. As the debilitating loss leveled me, a profound belief has welled up inside me, suggesting that maybe David did not die for nothing. I realized I could harness this energy field, the strength of which I had never experienced before.
It is difficult to share this experience unless you have been through it yourself. But out of this complete annihilation of my entire belief system, and indeed the very person I was before, came the blessing of my obsession to bring more love — through music — to the world. David had shared with me that he did not like this world and where it was going — he told me he did not fit in.
When I was going through his apartment I found this little gem on his desk among many song lyrics, “In the whispering wind I opened my eyes to see your shadow before me, Your body shaped among the clouds, up there — there is a story.” The idea and concept of Birdsong began to take form — up there. There was the story and what a story it is.
My undying love for David has propelled me through the darkness, and so the story of Birdsong begins. It is not just David’s story, and my story, it is — our story. We will write it together through creativity, love and struggle. The creation of BIRDSONG is a group effort — only through co-creation can it become the agent of transformation we envision it to be.
BIRDSONG is designed to become an indispensable resource for identifying programs and forums and support groups to assist people with mental illness. It is a far-reaching and free exchange of ideas emboldened by the inspiration of music. I feel it is important to open up a vast new dialogue about how society can contribute to change.
So this is my open call to any person living with mental illness to share their music and whatever else you feel could be helpful to others. We welcome you with respect, love and acceptance.
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David felt, like so many in his position, isolated and excluded from what is considered normal existence. You don't have to look at the news for long to see how even our top leaders exclude the marginalized. Society just wants to look away. There's a lot of talk, but they don't realize that the language they use has a serious effect on our levels of tolerance for people with mental illness.
I had no idea for a long time, but now I realize that the way we refer to those groups can often be complicit in perpetuating this chronic cultural exclusion. So, most crucial to the discussion, and certainly a foremost concern of BIRDSONG, is to re-examine the terminology surrounding diagnoses of "mental" (as supposed to physical) illness. We can choose our words carefully, but with words we can also include or exclude. So often we are not even aware of it. At all costs, our language must be one of absolute inclusion.
Much debate over proper terminology has already taken place, and new labels — official or otherwise — have emerged. Researchers have found that survey participants show less tolerance toward people who were referred to as "the” mentally ill when compared to those referred to as "people with mental illness." They were more likely to agree with the statement, "the mentally ill should be isolated from the community," than the almost identical statement, "people with mental illnesses should be isolated from the community.” The findings suggest that language choice should not be viewed solely as an issue of "political correctness.”
I mentioned this to a few of my friends, many of whom expressed overall fatigue of political correctness. Many of us are worn out by it at times. I am a rebel at heart and it makes me feel like I'm being bullied into a certain conservative way of thinking and being. But this much is clear — language choice should not be viewed as an issue of political correctness; it should be thought of as a matter of common human decency.
There are usually positive intentions behind the push for sensitive language that reduces the risk of upsetting anyone. Unfortunately, some of these efforts come across as aggressive, pretentious, oppressive and counter to the principles of free speech. Mental health advocates can be overzealous and judgmental, even when pushing for diction they believe is nonjudgmental. This behaviour makes the recipients of criticism feel beleaguered rather than enlightened.
We at BIRDSONG believe that it is wrong to exclude anyone. Only respectful discourse can accelerate the process of hashing out the language. Maybe then we can significantly improve the attitudes and beliefs behind the words.
Going forward, we at will refer to those facing mental health challenges as “people with mental illness” or “people who struggle with mental illness.” Beyond that, through BIRDSONG, we can help each other with our diction on a larger scale and encourage each other to be careful with our words and sensitive to those we use them to describe. I don't think that is too much to ask.
What is clear is that the language we use has measurable effects on our levels of tolerance for people with mental illness, and we owe it to them to change our language. Even if it is more awkward for us, doing so helps change our own perception, which will, in turn, encourage the rest of society to treat all neglected groups of people with equal respect.
The manner in which people engage with one another during the discussion of mental health is as important as the actual issues. People are often open to being politely educated, not lectured or lampooned. But no matter what words we think are appropriate, all of us can benefit from being more sensitive, tolerant and empathetic in all aspects of our lives.
To that end, the evolution of mental health terminology has been rapid, as many diagnostic terms have been altered or eliminated alongside media usage. People who work with a therapist, for example, are more often called “clients,” not “patients.” In part because of the imposing and frightening implications of “manic” and “mania,” “manic depression” became "bipolar disorder."
Now that many organizations consider drug addiction a mental disorder, some believe it is insensitive to call someone an “addict.” The word has a stigma of its own that is implicitly negative. During one of its more recent updates, the Diagnostic and Statistical Manual of Mental Disorders began using the term, “substance use disorder.”
People who live with mental illness have introduced alternative terms as well, some of which mental health professionals have adopted. The phrase “crippling depression,” has become a popular synonym for severe forms of major depressive disorder. Adding the wording, “high functioning,” in front of various mental illnesses has become a common linguistic pattern as well.
Some career-driven millennial women with clinical depression, for example, tend to be more comfortable with “high-functioning depression.” They feel like the phrase more accurately describes their experiences. In line with the pattern of reducing judgmental tone, some of the diction around suicide has also changed. Those affected by suicide often use the inclusive language, “died by suicide,” rather than “committed suicide.” The latter risks the implication that suicide is a crime, and employs rhetoric that is upsetting to those who have attempted or been affected by suicide.
In my own situation, it still puzzles me how insensitive people can be. People who don’t know me at all give themselves permission to ask how David died. I state, “He died from mental illness” and look them in the eye. I know their curiosity is stronger than their awareness of what it might feel like to be the mom of a deceased child being asked to go over the details of a tragedy that has given her PTSD.
The latest term being used for people with schizophrenia and other severe psychiatric disorders is ‘’people with lived experience." In reading the literature it is apparent that most of the time the term is meant to imply that the delusions, hallucinations, and other symptoms experienced by individuals with schizophrenia are merely part of a spectrum of human experience. It is thus an implicit refutation of the medical model of disease.
Interestingly, most individuals with schizophrenia, including those promoting the "lived experience" terminology, are receiving medical disability benefits. Logically, if they do not believe that they really have a disease, should they receive benefits? The term ‘’schizophrenic’’ has been prohibited by some “word police" and by various departments of mental health that have decreed only ‘’people first" terminology to be politically correct.
Terms like "diabetics, alcoholics, epileptics’’ and ‘’schizophrenics’’ can usefully indicate a group of people with a common condition, and some individuals with schizophrenia refer to themselves this way. Thus, for some, it may be a perfectly acceptable term. For others, it is an insult. We must keep an open mind about such differences in perception.
To those of you reading this, we encouraged you to write and share your story with us and rest assured we vigorously defend your right to use whatever language you please to describe yourself and your experience. To join the dialogue and make suggestions and comments please sign up for our monthly newsletter and jump on the BIRDSONG bandwagon!
Yours in music,
Sources: How Political Correctness Has Changed the Language of Mental Illness Joseph Rauch Materials provided by Ohio State University. Originally written by Jeff Grabmeier Natasha Trace