Yesterday afternoon I received a phone call. My daughters are enrolled in Child Health Plus for their health insurance, and our family was selected to participate in a national survey about our experience.

My responses to the first few questions would probably have given the surveyors justification to conclude that the program was effective. I reported that my children were in excellent physical and mental health, that they were showing no signs of learning disabilities or emotional disorders. They were not taking any prescription drugs, and they did not have any physical limitations that prevented them from participating in normal childhood activities.

The trouble arose when the interviewer asked me the following question (paraphrased—I can’t remember the exact wording): “How often are the health care providers for your children willing to accommodate for your cultural differences: always, almost always, often, sometimes, almost never, or never?”

I was silent.

“Ms. Hayes? The question was ‘How often are the health care providers-’”

“I heard the question,” I interrupted. But tears had started to come to my eyes as I thought back over my experiences. “The answer is never.”

Naturally, that led to a series of questions about my race, religion, and education levels. I’m an educated white female. That doesn’t fit the profile of someone who might feel culturally marginalized in our health care system. But I’m certain I’m not alone.

Parents or consumers?

My experience began with my first pregnancy, my first extended involvement as an adult in the health care system. I would attend one check-up and be told that everything seemed normal. At a subsequent check-up, I had gained too much weight. 

At the next check-up, I hadn’t gained enough, and I was accused of “starving my baby.” I was encouraged to go have a burger and fries at McDonald’s. When I asked questions, I was told that I was thinking too much.

The health of my pregnancy was being judged by a parabolic curve, where my various scores—blood pressure, weight, and various test scores—were supposed to fit within two degrees of standard deviation. The gauge of the tests was whether they were “normal” for a woman of my age, not whether I was healthy. In my seventh month of pregnancy, I began to feel like the system was not conducive to allowing for the natural childbirth I wanted. I read and researched about alternatives to hospital birthing, and concluded that the safest choice for me was to hire a home-birth midwife. 

After 24 hours of labor and an extended period of pushing, I was exhausted, and my midwife brought me into the hospital for an IV. Before we were out of the triage room, I gave birth naturally to a healthy baby girl. 

Bob and I were packing our belongings to go home the next morning, when suddenly we were surrounded by a pediatrician and two nurses. 

“You’re not going home,” I was informed. “Your daughter has a very serious blood infection. She may have spinal meningitis, and she could die. You most likely contaminated her by birthing at home. You’ll be here for 10 days.”

For the time being, I’m going to leave the guilt, shock, and despair that I experienced as a brand-new mother out of this discussion. We won’t talk about the impact it had on my own health. After all, the topic of the survey was my children’s health. In this particular story, newborn Saoirse was then given a spinal tap. She was put on a drip IV that made it impossible for me to nurse her, and put on a regimen of four different antibiotics. We were under constant surveillance. 

At first, I was too shocked to hear the comments from each nurse that came in. But late in the night a day or two later, one nurse began looking back and forth at her records, double checking something. “Is there something wrong?” I asked her.

“It’s just that, well...” the nurse faltered for a moment. “This baby looks very healthy to me. I wanted to make sure this is the right baby. She doesn’t have any symptoms.” In the dark of night, I began hearing the comments from each nurse that had come through earlier. My baby was beautiful, they’d each said. She didn’t look sick. She didn’t act sick. The next morning I confronted the nurse on duty.

“I don’t think I agree with the diagnosis,” I told her. “Can you please tell me my rights?”

“There isn’t anything you can do,” I was told. “The hospital can take custody of your baby.”

There never was a blood infection. The initial sample drawn had been contaminated in the hospital. But what did I learn? That by researching and taking the action that I felt was most conducive to my child’s and my health, and choosing to birth at home until a trained midwife felt it was medically necessary to seek hospital assistance, I was regarded by the conventional medical system as a danger to my child.

That was just the start of a long line of experiences that have taught me that an educated parent who sees themselves as the primary care practitioner for their children, and therefore takes the time to give care at home first, and opts to read and research before “consuming” services of the health care industry, is not safe in the conventional system that my daughters’ insurance covers.

My experience has been repeated every time I’ve had to bring my daughters in for care—an emergency-room visit for Saoirse when she was seven for a farm injury, where I agreed to a tetanus vaccine and the physician ordered a combination tetanus, diphtheria and pertussis vaccination without my consent; a trip to an opthamologist when I noticed Ula was developing a wandering eye, where I was told to return a few months later to begin exploring surgery (the vastly cheaper and more successful option of vision therapy was not on the table for discussion); the trip to the dentist for Saoirse, where the dentist never spoke to Bob, but simply left word with the receptionist that she was to schedule a return appointment for the unexpected onset of multiple cavities, with no discussion of possible nutrition issues, food allergies, or alternatives to drilling a baby's teeth.

In each case, Bob and I have been guarded, or even fearful. If we disagree, if we assert our intelligence and our rights, will we be reported for something? Will we be subjected to an investigation? Will temporary custody be taken of our children? To someone more familiar with the system, these may seem like irrational fears. But we confronted this threat once before. Maybe we would have been successful in a dispute, but that is not a chance we wish to take.

A Missed Opportunity to Learn from Parents

We are not alone in our fears. We’ve met many parents along our radical homemaking path who believe it is their responsibility to be truly informed about all health issues the children in their care may face, who do not merely question the conventional health care system that has transmogrified into a medical industry, but live in fear of it.

I do not completely reject conventional western medicine. But I do not have blind faith in it, either. When medical issues confront my family, I want to read and research. I will not limit my investigation to positivist science, nor to conventional western practices. I will have explored the spiritual, emotional, nutritional and environmental issues behind whatever we are confronting. And that makes me (and many folks like me) feel like a cultural anomaly during those times when I must enter into a conventional health care system.

That’s too bad, because folks like me who read and research widely and who have the most intimate knowledge of their children’s health probably have a lot of good information we could bring to the table to improve care in this country—if we felt safe enough to share it. But instead,  fears like mine may prevent those of us who are part of the self-educating counterculture from accessing care when it is most needed.

In my case, when I can afford it, I take my children to caregivers outside the insurance network who are willing to work with my cultural values and who take my research seriously. But that’s a pricey option. Not everyone can afford to make that choice. And thus, even with health insurance, not everyone will get the care they need. And that’s the bit of information the survey simply didn’t ask about.

Shannon Hayes wrote this article for YES! Magazine, a national, nonprofit media organization that fuses powerful ideas with practical actions. Shannon is the author of Radical Homemakers: Reclaiming Domesticity from a Consumer Culture, The Grassfed Gourmet and The Farmer and the Grill. Her newest book is Long Way on a Little: An Earth Lover's Companion for Enjoying Meat, Pinching Pennies and Living Deliciously. She is the host of Grassfedcooking.com andRadicalHomemakers.com. Hayes works with her family on Sap Bush Hollow Farm in Upstate New York.