I wish it was as okay to talk about Jesse’s OCD as it is to talk about someone else’s autism or ADHD or Down Syndrome or physical disability. I wish teachers didn’t look at me like I’m CRAZY when I broach the idea of speaking with students about OCD and how it affects Jesse. The strangeness of true OCD is still too much for people. It speaks to stigma.
Jesse stood up suddenly in the middle of a silent math class last month and screamed out that she wanted to have sex with all the boys in there. Then she singled out two boys and invited them to have sex with her. She couldn’t stop herself. The teacher sent her to the principal’s office and she was promptly suspended for a day. They made Jesse sit alone in the principal’s office for two hours, her heart filled with humiliation and anxiety and the continuing obsessive thoughts. Then the principal called me and pleasantly informed me of what happened and of the suspension, about five minutes before I picked Jesse up at the end of the day.
I had just met with the principal, the school psychologist, the school counselor and Jesse’s teacher four days earlier, because Jesse had been blurting penis talk. We discussed OCD. We discussed the lack of volition behind these behaviors. Everyone nodded and said yes, yes, let’s try this and let’s try that. And then they did none of it and then they suspended her. During the pleasant call regarding the suspension, the principal informed me that they would never expel Jesse. No no no. They would use progressive discipline and eventually, if things didn’t improve, they would “suspend her in place.” That means Jesse would spend her school days in a room by herself, learning alone.
I remember laughing when the principal told me that, but not in a happy way. I remarked, “If you do that, why would I send Jesse to school?”
Because it is definitional stigma — the total shunning of an individual.
Well, let’s be more specific. Of a small child suffering from a severe bout of mental illness.
I don’t think for a moment that the principal was being thoughtless, intentionally unkind, or a strict disciplinarian. She’s actually a delightful, warm, caring person who seems to want to do right by Jesse. After the suspension, I sent quite a long letter to her and other people at the school, laying out some ideas for how to modify Jesse’s school day and give her some therapeutic tools to help her cope. The principal has been responsive and accommodating, open-heartedly embracing all of my suggestions. So I conclude that silence in our culture has left her ignorant — as I have been — about what OCD does to a person, and how utterly useless the usual disciplinary tool bag is.
Of course Jesse shouldn’t be saying sexually provocative things in fourth grade classrooms — or anywhere for that matter. Although here’s an aside. How exactly can we judge her when our world is overflowing with sexually promiscuous images and porn? And let’s stop blaming the internet. A simple trip to the grocery store can fill a kid’s head with hyper-sexualized images as she waits in line staring at magazine covers. And why should we judge Jesse more harshly than the fourth grader who comes to school flipping her hips in a short skirt, making goo-goo eyes at boys, wearing make-up, and being an excluding mean girl on the playground? They’re both thinking about sex — Jesse’s just being more direct about it.
Okay… way, way more direct.
But those are just a couple of the endless hypocrisies Jesse is grappling with as she takes in the world through her anxiety-addled eyes.
Last year a person I know vented to me about a girl in her kids’ school with Down Syndrome who had a habit of going around and touching other kids’ butts. This person felt that the girl didn’t belong in the classroom with other kids because of that one behavior. She was really upset that the girl’s parents had lobbied for accommodations and even sued the school to ensure that their daughter would be integrated into regular classrooms with assistance, instead of being shunted into a special ed room.
I was more upset by the speaker’s attitude than by the story. I didn’t understand her vitriol over this situation. I was with the parents. I approved of their advocacy and I think they were right. (I’m glad I felt that way, because now it’s my own Jesse engaging in disruptive, inappropriate behaviors.)
Lost my train of thought there… Right, so that’s what I was getting at: of course Jesse shouldn’t be asking boys to have sex or talking about penises at all odd hours at school. But disappearing her isn’t the answer. Understanding and helping her is.
And that’s why I want to talk about OCD, openly and without shame. I want to wear a giant poster board shirt and stand around on street corners. “MY CHILD IS AWESOME AND SHE HAS OCD.” Or maybe… “MY DAUGHTER HAS OCD. IT SUCKS. SHE DOESN’T.” I want Jesse to talk about it. I want her to own it and be grumpy about it and laugh at it. I never, ever want her to be ashamed of it, and I will disappear anything and anyone in her life who asks her to feel that way.
How could I possibly feel ashamed of Jesse for suffering from a mental illness? It’s not like it’s her fault. The only shame I feel is that, before I understood what was going on with her, I felt ashamed — because I thought she was just being a volitional jackass. I was wrong.
Instead of shame, these days I feel a profound compassion for my little girl, whose brain is full of horrifying, anxiety-driven images of misunderstood sexuality and violence, against her will and despite her best efforts. I wish you could see her at the end of most school days — the sunken and exhausted dark circles under her green eyes, her head hanging in shame, a feeling of failure leaking from her pores like an oozing pus. I wish you could hear her when she tells me that she doesn’t want other kids to laugh at her anymore. I wish you could see her deep, blank sadness over missing school activity after school activity because she can’t manage it.
And I wish you could see how much courage it takes for her to drag herself out of bed every weekday morning and prepare herself for five hours of Herculean struggles to achieve self-control. She rarely balks. She is an extraordinary child who is persevering through some truly horrible shit.
So I wish you wouldn’t shun her, dear world. I wish you would give her a break, and maybe even a hand.
I wish it was as okay for her to have OCD as it is for kids to have learning disabilities these days.
Would the writer of this blog post please contact me? firstname.lastname@example.org. I’d like to talk more with you for a story I’m doing but cannot find any contact information. Thank you. Dan Simmons