I have diabetes. I’m an alcoholic. I have cancer. I’m bi-polar. A label can speak volumes. We use them all the time. But why do you have diabetes but you are an alcoholic? Why do you have cancer but you are bi-polar? All four are physical diseases. Yet the diseases that impact our below-the-skull body are things we unwillingly have while the diseases that affect our minds are things we are. Implicitly, a disease that attacks your tissues is beyond our control, while a disease that influences our thoughts and actions is somehow a deliberate choice; a part of our essence, as if we’ve decided to have mood swings for the fun of it or could control our inattentiveness if only we wanted to badly enough.
Labels are powerful. We’ve all sought them — for our kids, for ourselves. Insurance companies demand them before they’ll pay for a doctor’s visit. Schools demand them before they’ll give your child a 504 Plan or Individual educational plan (IEP). As parents, we pay lots of very expensive specialists to sometimes give us more than one. Ideally, the label tells us what direction to take to relieve symptoms our kids suffer, to treat conditions that prevent our kids from living life to the fullest. At least, that’s the way I thought it was supposed to work.
Once my child had certain labels, I realized that not everyone bothered to look beyond them. It was a rare person who could use the label as a hint about my child instead of a complete summary. Being hyperactive was not the same as having brown hair. Being anxious was somehow a weakness of character while having blue eyes was a beautiful trait. It didn’t matter that neither represented a choice my child had made.
Sometimes, labels are woefully inadequate. And sometimes, labels are downright evil. When a label is used to summarize a person’s entire experience into one or two words, when the sum of a person is rolled into one pejorative label, the impact is devastating.
Recently, more than a dozen teens in Leroy, New York were stricken with sudden onset neurological symptoms. In TV interviews, the symptoms resembled Tourette’s Syndrome or Sydenham’s Chorea – vocal and motor tics, uncontrollable motions and clear emotional distress. Some teens knew each other, others didn’t. Apparently, New York health and education officials came up with negative results as they searched “exhaustively” for answers. Infectious and environmental triggers were “ruled out.” Experts in neurology also came up empty handed and since all these experts couldn’t come up with any labels in their label-making tool kits, they were faced with a choice. They could acknowledge that their tools and knowledge were inadequate, that the mystery remained unsolved. Or they could — and did — choose the easier option. They blamed the patients. “Conversion Disorder” was the label dropped like a bomb on the unsuspecting teens as they appealed for help on national media. Conversion Disorder? The politically correct label for “hysteria”? Seriously? Because the first dozen teens were all girls, reporters for NBC, Fox and CNN all repeated the “diagnosis” with almost straight faces. Then a boy seemed to be showing the same symptoms. Suddenly, “Conversion Disorder” didn’t seem like such a plausible label. Suddenly, these hysterical girls might not be suffering from psychosomatic, stress-induced, mimicked tics and twitches after all.
I could write a full editorial on the sexism of a label like Conversion Disorder. But the point that really inflamed me was how the whole national conversation centered on blaming patients for mental illness instead of demanding better tools to find the physical root causes of that illness.
Approximately 1 in 400 children must learn to live with Type 1 Diabetes and there is rightfully a national outcry, with appropriate campaigns to take sugar-laden vending machines out of school cafeterias. Yet 1 in 100 children sits in classroom trying to hide OCD and an utter fear not only of a trigger (germs, poisoned food, uneven numbers that will cause unspeakable tragedy) but also in fear of being “outed.” For having a mental illness, even one as common as ADHD or as misunderstood as OCD, is a Scarlet Letter. Where is the national campaign to mandate that teachers receive “mental health coping tools 101” training? Where is the cry for better research funding to understand the medical/biological causes and cures for diseases within the skull, not just below it?
Labels help us get treatments for our kids. But they can also come with huge burdens and stigma. I think of other awareness campaigns that have changed society’s views – civil rights, women’s rights, gay rights. They all met – and continue to meet – great resistance. But over time, accomplishments have come because the people who had a label (black, woman, gay) accepted the label, even embraced it, while refusing to be summarized by it, refusing to be it. If I can accomplish one thing as a parent, it will be to help my kids do the same.
Shared with permission