On Radical Acceptance (& Not Fixing Your Kid)

There’s a small town in Belgium named Geel (pronounced hale with a throaty, Germanic H). By 1930, a quarter of its residents were mentally ill. If you know about Geel, you know this was not because something lurked in the water or food supply. It was because for 700 years families in Geel accepted mentally ill patients, or “boarders,” to live with them in their own homes. The town got a nickname: “Paradise for the Insane.”

I’ve never been to Geel, but I recently heard about it on NPR’s Invisibilia podcast. In the episode, reporter Lulu Miller interviews Ellen Baxter, a researcher who earned a grant to live in Geel for a year. Prior to this trip, Baxter had faked her way into a mental institution, wanting to find out about the therapeutic practices used. She saw virtually none. What she did see: people watching television, looking out the window, waiting for a bell to ring to tell them when to take their meds. She became deeply troubled by the American practice of neglecting, ignoring, and discarding people with mental disabilities. “I was searching for some place where dependent and disabled people were not thrown away,” she told the Invisibilia reporters. Then she learned about Geel. As she headed to the small Belgian town for research, she carried one big question in her pocket: Was it a burden for the families, living with their boarders?

If you have an hour, the Invisibilia episode is well worth a listen, but I’ll continue to recap some of the finer points. By and large, the answer Baxter got from families was: no. It was not a burden to live with their boarders. And this was not because the boarders did not exhibit symptoms of mental illness. One man locked himself in a bathroom. Another hallucinated that he was being attacked by lions. A third developed an infatuation with his host woman, Toni, who had to negotiate her boarder’s desire to hug and kiss her relentlessly. (Toni’s husband was less than thrilled.) Instead of finding it a burden, however, the families said they found the situation “normal.” This was just part of life in Geel. It was a tradition older than the existence of the United States. Sure, the families figured out accommodations for their boarder’s unique behaviors—the host of the lion hallucinator, for instance, pretended to chase away lions—but they did not try to “fix” their boarders. They accepted them as they were.

Baxter learned this last point when she encountered a boarder she called “The Button Man.” Every day, this man would twist the buttons off his shirt, and every night, his female host would sew the buttons back on. Baxter, remarking on what she thought was a terrible waste of the host woman’s time, suggested that the woman fasten the buttons with twine instead of thread. The host was put off. Why would she do that? “This man needs to twist off his buttons,” the host woman said. Let the man twist off his buttons!

Reporter Lulu Miller: [This], given Ellen’s background, was revolutionary. Letting people be was the antithesis of the medical model she had studied in college, a model built on the hope of fixing the problem. And after the buttons guy, Ellen began to notice, acceptance was everywhere in Geel.

*

When my husband and I received Fiona’s diagnosis five years ago (a diagnosis that informed us our daughter would have moderate to severe—or perhaps profound—intellectual disabilities) I still had to go to work. I still had to pay bills. I still had to pump gas, and one day I found myself pumping a tank of gas, talking into a cell phone, sobbing to my sister, and saying two sentences. The first: “I didn’t sign up for this.” (Indeed, I did. I just didn’t know it.) The second: “I can’t fix this.”

The unfixability of Fiona’s syndrome was utterly devastating. Here was a problem and there was no solution. No operation to be scheduled. No genetic infusion to be made. We couldn’t go finding her “missing bit of chromosome four.”

The weird sand dune from the movie Beetlejuice. Red twisty objects are protruding from sand, and a white door hangs in a blue sky.

It was simply missing. I wanted to find that bit desperately. I subconsciously imagined that a “missing bit of chromosome four” was buried in some vast, eerie sand dune among animal spines and other fossils. I imagined I might stumble across it one day, kick it accidentally with a sandal. Oh, there. The tip of chromosome four. Right there beside a raccoon skull. Now if I can just figure out how to insert this into every one of my kid’s cells.

 

Without a medical solution to a genetic deletion, my desire “to fix” got channeled into therapy. By the time Fiona was five months old, an early interventionist came into our home weekly because Fiona, at five months, had been officially labeled “delayed.” Other babies her age were holding their heads up, rolling over, even sitting up, and my child was still limp in my arms, mushy as a newborn. To improve her gross motor development, the interventionist’s major recommendation was tummy time. Tummy time, tummy time, tummy time. I heard those two words obsessively like a religious mantra, and I tried to work it into Fiona’s day wherever I could.

But Fiona hated tummy time, and on top of swallow studies and echocardiograms and EEG’s, this was making for a rather shitty initiation into motherhood. One week I finally asked the interventionist, “How much tummy time should we do?” I was hoping she’d give me a reachable limit. Thirty minutes twice a day. Two hours total. Something.

“No amount is too much,” she said. My shoulders fell, as I knew I’d never be free from the pressure to prop my kid on her belly and then call her name while she screamed, all drooly, into the floor.

Somehow, somewhere, the urge to want to change my kid subsided. Maybe it subsided when my husband and I took one-year-old Fee to a national gathering for people with 4p- and their families. Maybe it subsided when I saw all these disabled people—people in wheelchairs and people who ran, people who ate orally and people fed by gtubes, people who spoke and people who didn’t—and I finally felt in my bones that all of these ways of being were good. And by good, I don’t just mean, “Hey, it’s all good.” I mean in that deep, affirming way that things are proclaimed good in Genesis. There is dark, and it is good, and there is light, and it is good, and there is a grown woman who gets around by scooting on her butt, and she is good, and here is my daughter, one year old, twelve pounds big, who has just started learning to hold up her head (thanks or possibly no thanks to our tummy time), and she is good. She is so, so good.

Somewhere after our first year with Fiona, the desire to change my kid died and got buried in that imaginary sand dune along with her nonexistent tip of chromosome four. The desire to catch her up in weight, the desire to keep her development as close as possible to her peers, the desire to make her into the standard-issue human, with its bipedal mobility and buh-buh B sounds…. It just… died. And I was freed into a deep acceptance for my daughter that felt bottomless.

This did not mean that we didn’t continue therapy. We did. Of course we did. But I no longer held onto desired outcomes with the same nervous, rigid tension of a clenched jaw. I gave my daughter opportunities to grow, yes, but I also trusted that her body would proceed in a manner we could always call, deeply and truly, good.

*

And that acceptance has mostly stayed with me. Except, of course, when it hasn’t. When my husband is away for two weeks, for instance, and Fiona wakes up twenty times in one night. Which happened last month. Between the hours of 11pm and 3am, my kid could not stay asleep, which isn’t uncommon for a person with 4p-. Each time that she awoke, she’d sit up and call my name, and I’d whisper across the room, “I love you” or I’d touch her back and gently lead her head back down to the pillow, and she’d fall asleep again.

For a few minutes she’d doze, but then she’d pop her head again, crying “Momma, Momma!”

At three-something in the morning, bleary-eyed and sleep-deprived, having suffered through over a dozen of these episodes, I finally yelled. It was a whisper-yell, a slight, raspy sound in the dark of night, but it was filled with rage, and I looked directly into my kid’s eyes without the slightest hint of compassion. “Fiona! Go to sleep! Go to sleep!”

She wept. I walked away. I threw myself back into bed. I wished she were different. I wished she were the kind of kid who fell asleep and stayed down. I wished I could get a straight night’s sleep just once, just once. I clenched my teeth and hated my situation and she kept crying, and I realized neither of us was sleeping. I went back to her, cradled her, and brought her into bed, where she wept in a new way, a soft and hopeless way that might have just meant I’m really tired or I miss dad but could also have been, You aren’t accepting me as I am, and right now I am a person who can’t stay asleep.

I apologized, and we fell deep into sleep together until the bird-chirping hour of 7-something.

*

Psychologists in Geel who treat the boarders argue that the families play an integral role in the boarders’ wellness. The psychologists give the families no diagnosis information about the boarders. They don’t want the families to develop preconceived notions. “We just want [the families] to share family life with them, share life, not treat them,” says one psychologist on Invisibilia.

Not treat. Not fix. Not see the person as a problem to cure.

My Family and I went strawberry picking. (Image: quart of strawberries)

Fiona picked leaves instead. (Image: A thin kid with an Elmo T-shirt and straw hat, leaning into a row of leaves, grabbing.)

(Above, photos from my family’s trip to a strawberry patch. While her mother, father, and sister picked berries, Fiona picked leaves.)

Why? Because when a person is seen by their families as a problem to be cured, it can cause serious damage to them. The Invisibilia episode moved on to this next fascinating chunk of research: male patients with schizophrenia who had been treated in facilities were significantly more likely to relapse when they returned to their wives or parents than when they went to live in separate lodgings. Why? Researchers found that the families were overly critical of their loved ones. They were sometimes even hostile to their loved ones, or they became overly invested in the person’s progress. In other words, they wanted their loved ones different.

Reporter Lulu Miller: This affect is often called the law of expressed emotion. The more you express these emotions [criticism, over-investment] the more likely the person you are thinking about will suffer. Crazy as it sounds, our private thoughts about a person—our disappointments in them or even our wish for them to get better—shoot out of us like lasers and can change their very insides.

For proof of the latter, researchers put people into MRI’s and made them listen to their mothers’ criticisms. The criticism not only raised the participants’ blood pressure; it changed the parts of people’s brains that regulate emotions.

What does all this mean? Why am I talking about Geel and schizophrenia and whisper-screaming at my kid in the middle of the night? Because this Invisibilia podcast suggested an idea to me that seems as true and as vital to family life as ever I’ve known, one that is kind-of rocking my world: Living with a person who wants you to be fundamentally different than you are… is toxic. No matter the scenario.

I really want my husband to be cleaner, to have a more discerning eye about household dirt. He doesn’t.

I really want Fiona to sleep better. She doesn’t.

Ellen Baxter wanted the Button Man to stop twisting the buttons off his shirt. He needed to.

The parents of some of the male schizophrenia patients really wanted their sons to stop being whoever it was that they were. They couldn’t.

It seems that our jobs as family members is to practice radical acceptance of our loved ones. Even in times of healing or recovery. Even while a person might also be working toward change, or progress, or gross motor goals, or feeding goals, or more stable mental wellness…. Even while we are helping them work toward these goals, as any parent of a kid with disabilities, or “special needs,” is doing. We are attending occupational therapy with them. We are modeling an AAC system for them. We are offering them spoonfuls of vary-textured purees. But if we do this with the anxiety of wanting them different, with the clenched jaw of nervous hope—the hope that this act, this spoon, this therapeutic hour will change them into something or someone else, someone we desire—our efforts backfire. Our desire to want our loved ones to be different will serve as a small eclipse between us and the solar source of our love. This I know. This I felt in the dark at 3 in the morning.

*

Yesterday, my husband pulled the plastic toddler slide out from the basement. Obviously excited, Fiona made a variety of vowel sounds, which burst forth from her gut as she smiled broadly. Aye! Ah! Yah! She was possibly trying to say slide. She was possibly just screaming with delight.

Petra, Fiona’s fully verbal three-year-old sister, started to mimic Fiona with equal exuberance. Aye! Ah! Yah! Together, the two of them created an ecstatic chorus of vowels. It was celebratory, and they danced around the plastic thing worshipfully like it was a god that had just gotten a new name. All hail the aye-ah-yah! They giggled and shrieked and laughed.

Never once did Petra correct her sister, who can’t yet make S or L or D sounds. Never once did Petra tell Fiona, “It’s called a slide. Sl-ide!” Instead, she joined in her sister’s language. She joined in her sister’s song.

We just want them to share family life with them, share life…

[Photo: Thin, three-foot tall kid standing in a field, wearing a striped straw hat, khaki green shorts, and a white T-shirt with Elmo’s face on the front. She’s holding a leaf up to her chest, fiddling with it in both hands. She’s  pressing her lips together and making a kissing face. Behind her is an out-of-focus man, looking at the camera in sunglasses and a black hat.]