My son, who is developmentally disabled, turned 25 this spring. The future looms. This is why a recent podcast aired on NPR caught my interest.
This episode of “Invisibilia,” by journalist Lulu Miller, explores a model of care for people with mental illness which, until now, has been virtually unknown in the U.S. Miller takes us to Geel, Belgium, a small town near Antwerp, where for centuries the citizens have practiced a very inclusive form of foster care for the mentally ill. In many cases, adoptees stay with families for decades, their peculiarities managed, sometimes modified for safety purposes, but often simply accepted. While walking the streets of Geel, Miller sees several citizens talking to themselves, making gestures, and wandering into homes and shops. No one seems to notice. No one confronts them, re-directs them, or avoids them. People simply go about their day, greeting, meeting, and completing their business as usual.
Whether or not the legend is true that Geel’s longstanding practice of foster care stems from the Medieval-era martyrdom of a young woman, Dymphna, who became the patron saint of the mentally ill, the town honors her in its practice, which is supported by a small amount of government funding. The families Lulu Miller interviews see their place as care-givers to the mentally ill as a natural calling – something that is not questioned or resented. It’s the way the town has always been, and with very few problems over the years.
What Miller discusses midway through the podcast is astonishing. In the Geelian philosophy, mental illness is not viewed as something that needs to be “cured” at all, nor even necessarily treated with medication. Indeed, most of the people in Geel do not need to be medicated as they are allowed to be who they are, and they therefore are not filled with anxiety, shame, or rage over their condition. Miller hears one man singing happily as he passes her on the street. Another man’s need to hug everyone became a bit overwhelming for his foster mother, so the town helped to find him a girlfriend who would enjoy his constant hugging.
The final point Miller makes in the broadcast pierced me straight through – as it did Miller herself and her own father when they recalled the troubles long ago when her mentally ill sister lived with them. Her sister struggled horribly and was miserable, and in a poignant moment on tape, her father breaks down when he confesses he treated his little girl with anger rather than compassion for her outbursts. The sister, though, has now lived many years on her own in an apartment and is quite happy. She explains that she wasn’t comfortable until she could be in a place where she wouldn’t be constantly criticized, yelled at, and made to feel deficient. The podcast includes interviews with psychologists who have begun to find, in studies, that sometimes the best caregivers for the mentally ill are those who are not family members. (I held my breath listening to this part.) In many cases, the emotional bonds between parents and children can be so fraught with stress and expectations that it can make the illness worse. Non-related caregivers can often be more relaxed and accepting about the person’s special needs or unusual behaviors, not seeing these things as a reflection of themselves or their parenting.
Unlike Miller’s sister, my son does not have a mental illness. He has autism, which is a cognitive and social disability that cannot be cured or changed. He is medicated to reduce his anxiety, which can be crippling for him as he tries to navigate a life among two families with their complicated schedules and expectations as well as his various programs. But it has made me wonder: If his life had not been so complicated or people’s expectations of him so exacting, would he even have severe anxiety?
In America, parents are socialized to keep their children in line at all costs in public places so as not to disturb others or make them uncomfortable. Sometimes this is important to do – yes – as we take on the responsibility of teaching our kids how to get along in the world and fit in. Instances of parental neglect and subsequent shaming have been captured and spread on YouTube in recent years with self-righteous abandon. When Ramon was small, I heard critical remarks regularly from strangers in grocery stores and restaurants, as well as from my own family members, about my inability to control him. I felt constant shame because of this, and I doubled down on my efforts to change his behavior.
When Ray was first diagnosed in the mid-1990s, we sought out various types of therapy to help him with his speech, socialization, self-help skills, and school. One program that was very highly recommended was the Lovaas Method, an intensive system of Applied Behavioral Analysis that involved 16-hour days of constant “floor time” with the child, forcing rote repetition of “correct” speech, answers to questions, eye contact, and normative physical behaviors. Until just a few years ago, Lovaas therapists also used physical punishments to deter “wrong” behavior, including slaps and electric shocks. Many families sold their homes and moved to New England to immerse their children in this costly program. I remember feeling torn: Was I a bad mother for not choosing this for my child? Something about it seemed so very disturbing and wrong to me – the idea that adult humans could work so hard to “break” a child of his autism, like breaking a wild horse in order to ride it. To me, Ramon’s quirks were a part of who he was. His obsessions and peculiarities seemed to make him joyful; to “break” him of them would kill his spirit. (In fact, over the years the Lovaas Method has been largely discredited, as the majority of children who initially showed great strides in behavior quickly reverted to their natural selves within months after finishing the program.)
Now, at last, there seems to be a major shift underway in our attitudes toward “otherness,” as humans have come to accept a broader range of ways of thinking and being. The final walls to come down are those that have ostracized people who do not fit the traditional gender binary and those who are other-abled in body and/or mind. So, the question is: As tens of thousands of children with autism spectrum disorders grow up, joining so many others who are born with disabilities or who develop illnesses like schizophrenia or severe phobias, will we finally realize that we simply should not be bothered by an individual’s unique traits or mannerisms? Can we love and accept all the human beings who walk and work and live among us – no longer judging or teasing them, no longer shaming parents for letting them be who they are? (Anti-bullying campaigns have made great progress among our school children, but we still need a similar program for adults. Witness a certain presidential candidate.)
My son’s best friend Jessica has just moved into a group home in a suburban neighborhood, and so far she’s loving it. At 28, she’s excited to be in a house with four other women near her age who share her interests in movies, music, and foods. Paid caregivers, provided by the Clearbrook organization, attend the women at all times. Jessica’s care-taking grandmother (who is 91) is understandably relieved to have seen this move come while she is still alive to help with the transition. And now Ramon’s curiosity has been piqued – making me, too, feel relieved. Imagining him living safely and contentedly in a home without me or his father is a vision I’ve dreamed about for years. The story about Geel and new studies in caring for the disabled has helped reduce my fears about my son’s potential for being well cared for — perhaps even loved — by those who may not be family members at all.
I’m inspired to know about the paradigm of care in Geel, and I’m thrilled that Lulu Miller and the Invisibilia team have brought the story to us with the help of NPR. But what would make me happiest of all would be to believe that it is a concept whose time has truly come here in America, one to be embraced by communities across the land – and eventually the whole world.
Links to the Invisibilia podcast and to info about Geel:
Photo credits: Wikipedia, Huffington Post, autism-programs.com