“Good morning and thank you for calling the Faceless Medical Conglomerate. My name is Ubiquitous and I’ll be rushing you through the Elephantine Health Care System with an overload of data, industry buzzwords, and an aloof detachment meant to put you off your guard, making this call quicker, and my coffee break that much closer. Please state the last four digits of your Social.”
Prepared to discourage another deadbeat from bilking the system, Ubiquitous was taken aback when she realized that she had an advocate on the line – an individual aware of his mental illness, educated in its symptoms, and willing to go toe-to-toe with Big Business. That was the story in my head at any rate. What really happened was that alogia – the disruptive break between my thought processes and my speech – kayoed the conversation, and we both experienced the stilted cadence of paranoid frustration hogging the limelight. I call it the Clown Car.
How many cream pies of confusion and chaos can these Cerebral Comedians cast at my consciousness? On a good day it’s more than I’m willing to handle; on a bad day, it’s the Circus of Doom. Floating skulls, flaming bats, and every negative notion my illness can conjure, get crammed into a vehicle the size of a grapefruit, commonly referred to as my brain. But today I decided things were going to be different. I would work the trapeze with dignity and grace. I would be responsible for starting the conversation.
When I’m meeting someone for the first time, schizophrenia can turn me into a broken Furby. Nothing I say makes any sense. The chip for mimicry fails and I’m out there freezing my face off on a raft just left of the Titanic. I’m like an alien armed with a “Speak & Spell” playing Simon Says with the cat. My solution? Since I know that I’m better at writing than I am at cold- calling, I take a little time beforehand to jot down my questions and concerns. Then I can begin with those talking points in place. It’s not easy, but I do it because it works. Try it yourself. Build trust. Be brave. Be authentic. Tell the truth. That is the definition of advocacy, the path to creating and promoting support.
I’ll admit that I went into this with some expectations based on previous dealings with business people. They seem dismissive, and often reject the mentally ill out of hand. A little stigma goes a long way, especially the self- deprecating kind. So I steeled myself for the anticipated brush-off and the rapid-fire string of useless phone numbers, certain that I would be jettisoned into the audio void of perky infomercials and bad jazz. To my surprise, something unexpected happened: Ubiquitous listened.
She listened patiently as I told her that this was my first time talking to the medical services company assigned to assist me with my health care. She waited as I struggled to silence the Clowns; she gave me space to step away from their Car. I kept trying to get the words right, and she encouraged me to stick with it. I nervously explained my diagnosis to her, and she listened without judgement. I told her that I needed help navigating their system, and that logistics were not my forte. After pushing through my expectations and past the annoyance of my constant self-stigma, a miracle of sorts occurred. We were talking. Really talking.
Her name was Helen, and she wasn’t robotic at all. She was courteous and friendly, compassionate and understanding. There was a moment when I was trying so hard to communicate through my illness that I started to cry, and I could hear Helen on the other end choking back tears of her own. This was a real person, a friend.
There are people like Helen all over the world. They are there to help, but they need to hear it from us first; they aren’t mind readers. Our job is to set aside our own personal demons for the short time it takes to allow the Helens in. We need to let them see the person behind the illness, and they’ll respond accordingly. They will help us get the seemingly impossible accomplished.
She guided me through the proper sequence of questions designed to assist newcomers. My stammer leveled out along with my confidence. I even managed to say something funny. We shared a laugh. We connected. Of course, it took patience on her side and courage on mine, but together we stopped discrimination and stigma in its tracks. If only for that afternoon, we were changing the world, not just for one, but for the ones that follow. A chain reaction. A “change” reaction. The greatest show on earth.
Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.