Friday, February 14, 2014

Dear Young Therapist: Don't Be Afraid of the Dark

Freedom/Medfield Asylum
"Why is this child? Why did God create it? That's all I've ever wondered."

Thirty years from now, I often wonder what documentarians would say about how I and treat people who experience phenomena deemed to constitute mental illness. What will people say about my work? What will my patients think looking back at the experience of our mutual encounter within the confines of the therapeutic enterprise?

Watching this Oscar nominated documentary Children of Darkness by Richard Kotuk, I'm reflecting on my first experiences working within the mental health system. More than twenty years ago, living in Ithaca New York, I was a resident counselor for a supervised apartment program for people who had both developmental disabilities and mental illness. The residents had all grown up in large institutions. Caught up in waves of deinstitutionalization, they found themselves transferred to less restrictive environments.

I worked for a progressive organization that believed that any person, regardless of their disability, should be afforded the right to make an informed choice and the right to have dignity of risk. My employer created a network of group homes and supervised apartment programs that created simulated families for people who had no families. We created simulated communities for people who had been hidden from the community since birth. We worked hard to find ways to build bridges into the community, to help those who had been discarded find entrance and connection with the rest of us. A real life, rather than a simulated one.

Some residents were born with Down syndrome, others had Autism, and others had what was referred to at the time as mild to moderate mental retardation. The residents also experienced schizophrenia, bipolar disorder, and borderline personality disorder. One man struggled with pedophilia. Another young man was gay: I remember occasionally driving him to a store so he could buy gay oriented pornography.

For $6.33 an hour I worked Sunday through Thursday, 3-11pm. My responsibilities? I was the recreational coordinator: that means it was my job to come up with activities for the residents to do. We'd see movies, go bowling, take line dancing lessons, swim, and even take the occasional trip to New York City. I can't believe, barely even 21 years old, I was allowed to drive a van to NYC and take a small group of residents to the top of the Statue of Liberty.

When I left that job the residents organized a surprise party for me. I walked into an apartment and they all started singing "For He's a Jolly Good Fellow." I'm still a little overwhelmed each time I think of that day.

A year later I was an assistant director (aka, Q.M.R.P., a "qualified mental retardation professional") at a twelve bed group home for people with profound developmental disabilities. I made about $20,000 a year. The residents of the house I helped manage were from that last twenty people who lived in a large thousand bed developmental center that had closed. Our residents had no meaningful language skills. Their cognitive abilities were so impaired that standard tests of cognitive ability were useless. They had, essentially, no measurable ability.

I remember one resident who damaged her body in ways I didn't know a person could damage their body. She was heavily medicated on neuroleptic medication in an attempt to help keep her safe. She'd often be found under furniture frozen and unable to move. Other times she'd bang her head so hard bones broke. Other times she would rub parts of her body so intensely the skin would peel off like the skin of an onion might.

On an icy morning a large group of our staff traveled to a renowned behavioral center for a consultation. I was desperate to try to help her. The experts had no suggestions other than more Haldol. Higher and higher doses so she'd be even more immobile and more protected from whatever caused her to direct such violence against herself. She couldn't tell us how she felt and we didn't know how to listen to her.

I spent hours with her. I'd watch her closely, hoping something would reveal itself to me. I wished that some small action would help me unravel the mystery of this woman. Watching. Waiting. On a calm day sometimes she would sit looking at me. There were moments that I even sensed some sort of connection. Some sort of recognition that she knew she was there and that I was there too. Those were often the moments I would just cry.

One time she reached out and touched the tears on my face. Then she pulled my hair, slapped me, pinched my skin, and pummeled me with her hands, fists, and feet. When her violence became too intense like that, with the assistance of other staff, I'd restrain her.

I did the best I could.

Looking back on the past two decades of work, I wonder which times I crossed the line from doing my best to participating in an abusive and cohesive psychiatric system. I wonder who I've helped and who I've hurt. I wonder what happens when help hurts, or hurting is helping, or hurting is just hurting. I'm never exactly sure if I know the difference between any of these things.

Some twenty years ago I was sitting on a floor with a profoundly disabled woman with a psychiatric illness hoping for some sort of revelation. I've grown a lot since then. I now sit in a comfortable brown leather chair, looking across my office, knowing that I have no magic other than my ability to sit in the dark with another person and wait.

That's the best I can do.

"What the hell does it all mean? I mean you're here, tackling kids, holding them to beds, sticking needles into them. Is that psychotherapy? What's going on?"

"It's the best we've got. I'm serious. It's the best that we have. I mean there are other institutions that might be a little bit better, might be a little bit more staffed. I've worked in enough institutions to know that this is the best system we've got. Nobody's come up with a better system yet."

For more letters to a young therapist see Dear Young Therapist: Don't Be Afraid of the DarkDear Young Therapist: That Time My House Burnt DownDear Young Therapist: Cultivate Patience and Listen to the MusicDear Young Therapist: Consider Your De Rigueur Requirements | The Post-Doctoral Tie IncidentDear Young Therapist: Are You Ready to JumpDear Young Therapist: Perspective is EverythingDear Young Therapist: Sometimes We Can't Put Humpty Back Together AgainDear Young Therapist: Sometimes Race and Sex MatterDear Young Therapist: Don't Be Afraid to Love; and Dear Young Therapist: Allow for the Unexpected.


  1. Thanks, Jason, for sharing your experiences. I've worked in an institution with folks who have disabilities (and many have co-existing mental illness) for just about 26 years, and people's actions are puzzling indeed. I'm grateful I get to use music as a part of the listening process, and sometimes I wonder if anything I'm offering is of help in the face of so much trauma and loss. I can only hope that it makes some difference to be a presence who tries to listen, messes up and keep tries again. Ultimately, I have to believe that the relationship matters. A lot.

    1. Yes. I think at the end of the day it is about the relationships. When I look back at the people who I've worked with in the distant past, I never remember the individual interventions: I remember the relationship. Those precious few times someone from the past reaches out to me from the past they talk about the quality of the relationship they've experience with me, not the quality of the intervention. Increasingly, I am coming to believe that our interventions are simply vehicles for relationships to form.

    2. I have a vague memory of reading Yalom's "The Gift of Therapy" and his saying something similar to what you've said- that all the blah, blah in talk therapy is what you do while the real work of therapy (the relationship) goes on underneath.

    3. Thanks for stopping by, Roia. That does sound like something Yalom would say. It's been awhile since I read that book -- I remember thinking it was great when I read it.

  2. How did I miss this? You wrote the truth. It's the quality of being present with another that makes a difference. I'm watching this documentary today!