My office neighbor at work, a 50 year-old community clinician and gentle soul, originally from Colombia, came into my office with a question recently. I have always found him to be sensitive, caring, and curious about the feelings and experiences he encounters in his work. He asked, “So, the young woman you see who carries a doll with her… what is her diagnosis? What medications is she on?”
“I’m very curious, why these questions?” I replied. He explained, “When I was in training in Columbia, I used to see many women who carried dolls. It was a time of great violence in my country. These women lost their husbands… some saw them killed and lost their babies too.” I asked him, “What did you think then about why the women were carrying dolls?” He gave me a number of beautiful descriptions of possible meanings, given the context he and the women were in, about why women might carry a doll with them.
I asked him then, why should it be different in America? We may not know the context or full story of my young adult woman carrying her doll, but might we inquire? Try to learn her story, try to learn what happened to her? I went back to his story in Columbia and asked him how he approached helping the women who carried dolls. He told me, “Support and listening to all they went through, all the pain they experienced.” I asked again, “So why should it be different in America?
I suggested to him that although he didn’t know the diagnosis and medications she was on, he knew what was more important. He knew that people have their stories. Their stories become a context that frames how people see others and the world. He knew that terrible traumas happened that influenced their lives and contributed to the behaviors he was witnessing. But then he comes to America and receives “training,” and “forgets” what he already knows and has experienced. It is as if he is discounting his own lived experience as not relevant to his everyday work.
A bit more about diagnosis.
Once a month, a consultant comes to visit our team. He is there to offer suggestions regarding questions we have about working with various clients. A clinician tells the consultant about the client, but how? Our center prides itself on being “recovery oriented and trauma informed.” What does this mean? It depends. If you are an administrator, you have spent much money educating the staff on the principles of recovery. But teaching principles versus living a principle in everyday practice are vastly different.
For example, most clinicians continue to “present” to the consultant, “This is a 22-year-old young woman with a diagnosis of bipolar disorder coming to the center for…” The clinician presents the hospitalizations the client has been through and much else regarding their stops along the yellow brick road of the mental health system. Later on, nearing the end of their presentation, there is some information regarding their life story and traumas. But almost always near the end, almost as an afterthought.
People underestimate the effect of “her diagnosis is…” This is a powerful and subliminal message. Most folks have predetermined images of what someone with a given diagnosis looks like. You are already judged. For example, there are images in each person’s mind of one with “schizoaffective” versus “bipolar,” and the scourge of any center: “the borderline!”
In effect, our young people continue to carry their labels. Sometimes on first introduction a young person will say to me, “Hi, I’m John and have schizophrenia.” I’m not kidding; wish I were. The first time this happened I was stunned and not sure how to respond other than, “Might I call you John?”
Lately, after a number of discussions, we have been changing our practices around this issue. No longer do we give a diagnosis at presentations. We place the young person’s story, as told to us, front and center. People listening rarely ask “What is their diagnosis?” now that lived experiences are central. We are providing a sense of their struggles. We are trying.
We can’t be talking about “bizarre delusions,” another dehumanizing term. People hold beliefs that are meaningful to them. That they can’t communicate these beliefs to us in OUR language doesn’t make their beliefs bizarre. How would it feel for any of our staff to go to China knowing no Chinese and attempting to communicate, only to be looked at as if we were “bizarre”?
We can’t maintain the notion that hearing voices is only an experience of those with an “illness.” Voice hearing around the world is as common as left-handedness. Voices need not be eradicated. For some persons with lived experience, I am told that “taking away my voices is like amputating my left arm.”
And we can’t continue to provide case formulations that are simply repetitions of some history. Recovery case formulations use plain language to delineate factors in the person’s life narrative that have contributed to their current struggles and “symptoms.” For example, the person in recovery believing that she had triplets when she was eleven is not seen as having “bizarre delusions” that require medications per se, but might in fact have been gang raped by three men. We have to at least be open to these notions, no matter how painful the dark side of our human nature is. These are but a few of the everyday communications that can be discussed as we move to becoming a truly recovery-oriented, trauma-informed and sensitive team.
Of course, you are thinking of a very basic principle of recovery; as some state, “nothing about us without us.” Developing truly collaborative relationships remains a goal. Having our young person with us presenting their story to the consultant and listening and taking part in our discussions and formulations is still a dream. There are so many hurdles. There are so many fears. There are so many threats.
Back to my neighbor at work.
We are all peers in the cauldron of lived experiences. How sad that we provide training in America – and export training around the world – that in effect dehumanizes lived experiences, throwing it all on the ash heap of irrelevancy. Has the DSM become our pagan God? What is doll-carrying disorder, or any psychiatric diagnosis? Why do we need 3 out of 5 or 6 out of 8 criteria to make this or that diagnosis? So that we can prescribe medications to treat it? We are drifting further away from our essence. We are in danger of being consumed by our own DSM’s and alphabet soups of “evidence based treatments.” What will be left of our humanity?