Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
"Hearing Voices" Movement...Not For All
As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking. What if Ben's symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only "understood" their origin?
Oh, how I wish.
There is a growing movement of those who are doing just that, they say. I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.
My son, however, would be harmed by this "hearing voices" movement - or, in the US, something called Mad In America. I'm glad it has worked for some - but it is not for everyone.
Susan Inman talks about this in Huffington Post, Canada:
Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.
Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.
Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.
My comment to her post follows. A slightly shorter version appeared in HuffPost.
What do you think?
We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.
Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.
My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.
Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.
The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.
Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.
We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.
Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope