Community of Immunity
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Guest post by Proud 22q Mom
January 23, 2015
I recently read a spectacular book called, On Immunity: An Inoculation, by Eula Biss, that has stayed with me, in bits and pieces and, honestly, in entire passages. You should read it. Today. The book is incredible. And short. At the very least, just read this blog and pass my recommendation along to your pals.
I will come right out and disclose that when I was reading the book, I was on vacation in southern California and as soon as I landed back home, the news ticker began bleating warnings about a Disneyland visitor spreading measles throughout California, three other states and Mexico. Red flag. Red flag. Red flag. As of today, a month after the measles exposure in Disneyland, the count is now up to 53 confirmed cases of measles and the outbreak is not yet contained. After devouring fiction and bestsellers (and fluffy magazines) for years, I found On Immunity to be one of the most relevant and gripping books I have read; it is literally bursting with the facts, the history, and most importantly, with the fear that drives the vaccination conversation (and the spread of measles) in our country.
Now for the real disclaimer about what prompted me to buy a book about immunity over the latest and greatest Fifty Shades novel in the first place: parenthood. What set off my five-alarm gut reaction to the recent news of unvaccinated pockets in our country and the resurgence of a previously snuffed out disease like the measles, or whooping cough, is a bit more complicated. My daughter has a significantly compromised immune system and can't be fully immunized, because for her, the live vaccines actually present a threat to her already struggling immune system. Thus, she is far more susceptible to the viruses because she is unvaccinated and has a compromised immune system (I believe this could also be Webster's definition of Catch 22). Therefore, I am never far from the latest news on viruses and vaccinations (or a bottle of hand sanitizer).
Yes, the author's perspective as a new parent resonated with me and will certainly resonate with you, whoever you are, because we are all part of the same herd, but the truth is that parenting my healthy firstborn son and parenting my daughter are about as similar as riding in an airplane and jumping out of one. When my son was born, if I'm honest, it almost seemed like he was too healthy to get a vaccination, for fear it might make him sick, it might mess with nature, who had given me this incredibly perfect being to join the world. With Nadia, from the moment she was born, there was no thought of "too healthy." She joined the world with a status that flashed "high risk" and I still have a jewelry box of her little hospital bracelets, the size of pinky rings--reminders that we actually survived, when it seemed like we would all perish from exhaustion, from waiting in silent surgery waiting rooms and from the unbelievable way you have to cling to the earth when it has turned upside down.
My sweet little Nadia has a compromised immune system due to an infinitesimally small chromosomal deletion, 22q11.2 to be exact, that causes a colossal list of complications. Since she was born and we were told what was causing her to be so very sick and tiny, we have had immune concerns weighing heavily on our teeter totter world. Up. Down. Up. Down. But, no matter what part of our journey with Nadia we are on, the up, the down, the easy or the hard, her lack of immunity to the germy, wide world has been on the forefront of our parental responsibility. Indeed, I read On Immunity wanting to know more about why and how the country can consider vaccines, incredibly safe preventions for incredibly horrible diseases, a choice rather than a responsibility.
As I read the book, I found myself tabbing almost every other page. Truly. I wrecked my book, so please don't ask to borrow it unless you like serious dog-ears. The book articulated what has been killing me since the dawn of "why I choose not to vaccinate my kid" parenting blogs, discussions and articles. The notion that a study of 12 people (yes, you read that right, 12 people) in 1998 falsely linked autism to vaccines could still today, in 2015, be causing people to question vaccinations long after it was debunked by real studies and retracted by the author is unfathomable to me1. When I see the news with maps of high rates of unvaccinated children, pods of "high risk" for the spreading of diseases that are not in inner cities or poor towns, but in affluent communities in northern and southern California, I am speechless. Quite simply, vaccination is successful by getting the majority of the people to protect the minority of the people. As Biss writes, vaccines protect the minority of the population that "is particularly vulnerable to a given disease. The elderly, in the case of influenza. Newborns, in the case of pertussis." And as I am reading the book, I am envisioning Nadia, in the case of everything. Her sweet face, her wavy brown hair, her light freckles and cinnamon eyes and her chuckle that is deeper than she is tall.
As I read, I started to acknowledge the fear, the misperceptions about risk and the disconnect that allows people to feel that they have an individual choice in vaccinating, when vaccinating is, by its very nature and history, a community solution to serious public health problems. Did you know that the chance of contracting measles could be higher for a vaccinated person living in a predominantly unvaccinated community than for someone that isn't vaccinated in a widely vaccinated area? Last year was the worst year for measles in California in nearly two decades. And that was before the Disney outbreak. In 2014, California also had the highest number of whooping cough, or pertussis, cases since 1958. This is not a coincidence; the anti-vaccination movement has consequences that all of us need to consider. Biss weighs the facts and false information from all sides and exposes the roots of the vaccination dilemma--cautioning that "perceptions of risk--the intuitive judgments that people make about the hazards of their world can be stubbornly resistant to the evidence of experts."
"Our fears," she writes, "are informed by history and economics, by social power and stigma, by myths and nightmares…When we encounter information that contradicts our beliefs,…we tend to doubt the information, not ourselves."
As I read, I started to acknowledge the fear, the misperceptions about risk and the disconnect that allows people to feel that they have an individual choice in vaccinating, when vaccinating is, by its very nature and history, a community solution to serious public health problems. Did you know that the chance of contracting measles could be higher for a vaccinated person living in a predominantly unvaccinated community than for someone that isn't vaccinated in a widely vaccinated area? Last year was the worst year for measles in California in nearly two decades. And that was before the Disney outbreak. In 2014, California also had the highest number of whooping cough, or pertussis, cases since 1958. This is not a coincidence; the anti-vaccination movement has consequences that all of us need to consider. Biss weighs the facts and false information from all sides and exposes the roots of the vaccination dilemma--cautioning that "perceptions of risk--the intuitive judgments that people make about the hazards of their world can be stubbornly resistant to the evidence of experts."
"Our fears," she writes, "are informed by history and economics, by social power and stigma, by myths and nightmares…When we encounter information that contradicts our beliefs,…we tend to doubt the information, not ourselves."
Although you, the public, have a "choice" to vaccinate, I worry because my daughter does not. One of the unique aspects of immunity through vaccination is that small pockets of society can indeed exempt themselves from vaccinations without putting themselves at direct risk. As the book states, the "exact number of people this might be--the threshold at which herd immunity is lost and the risk of disease rises dramatically for both the vaccinated and the unvaccinated--varies depending on the disease and the vaccine." We realize when the number of people "opting out" of the vaccine is too many when we have already passed the tipping point.
In other words, when it is too late.
So, to those who decide to wait, to under-vaccinate or to obstain, please realize that you are contributing to an epidemic. Maybe not to your baby. To your child. To your neighborhood. But to our society. You are allowed to take that risk solely because you are protected by those who DO vaccinate. When you make an exemption just for yourself, you are failing to consider my freckled daughter, the children with cancer, the elderly, the immune compromised, the newborns, the people in society who life has made an exemption for. And let me tell you, as a mom whose world revolves around someone whose little life has been full of big exemptions and exceptions, I am terrified by your "decision" to choose to take a free pass. Just as I can't see who in the herd has made a "private" decision to not vaccinate their children, you, too, can't see who among us are the ones that you are protecting. They are not always obvious; they are not busy blogging about why you should become fully immunized. Oddly, it's hard for the sick, the babies or the elderly to do that. They aren't exactly on the speaking circuit and writing essays in their spare time. Which is why I loved this book. Fiercely researched and stuffed full of facts and thoughtful consideration of a topic that effects every single person in our country.
Nadia's exemptions, like the exemption from a perfectly healthy life, the exemption from a complete immune system, the exemption from complete normalcy, are so far removed from those who make a special philosophical, parenting exemption just for themselves, based on some debunked study, based on Jenny McCarthy, based on playgroup banter or a chicken pox party at their private school. Based on fear. When I read about those who parent based on whichever way the trendy wind is blowing and about mail order lollipops that have been licked by kids with chicken pox, I feel a bit like perhaps I have suddenly gotten some sort of flu myself. Sickened.
According to the American Council on Science and Health, vaccination rates in some pockets of affluent Hollywood are as low as South Sudan, where only 65 percent of children are vaccinated. For the record, herd immunity works only when 90% of the public is vaccinated, and when those numbers dip, the spread of disease is not contained. Precisely what is happening with measles right now and whooping cough last year. Just because you or I don't live in pockets where vaccination rates are the lowest, it doesn't mean that we don't travel or mingle with those who do. Our herd is a fast moving bunch these days. And apparently, a fearful one.
Biss addresses one of the key elements in the vaccination debate-that the rising numbers of unvaccinated people are not what one might expect: undocumented immigrants, single moms, the poor. They are, by and large, well-educated, upper-middle class, mostly white parents. People of privilege. The most glaring privilege, of course, is finding themselves in the land of the healthy.
As I have spent the past 9 years navigating the waters of an immune compromised land and learning about immunity, the notion of a "conscientious objector" to vaccinations seems more and more like an oxymoron, kind of like the "Great Depression." Biss points out that "conscientious objector," now a term that mainly refers to war, actually began when people in Britain refused vaccination back in 1898. Part of the appeal of this incredible book is in the facts, both present and historical. I was fascinated to learn that even George Washington, a smallpox survivor, struggled with the position of inoculation, and made the controversial decision to inoculate all new recruits, fearing that smallpox, not the British soldiers, would ultimately defeat his army.
On Immunity ponders the thinking of philosopher John Rawls, "Imagine that you do not know what position you are going to hold in society--rich, poor, educated, insured, no access to health care, infant, adult, HIV positive, healthy immune system, etc.---but that you are aware of the full range of possibilities. What you would want in that situation is a policy that is going to be equally just no matter what position you end up in." I couldn't agree more. We live in a country that allows us to decide whether or not to vaccinate our children or ourselves. We give people a choice, we give them handouts full of disclaimers or risks. But I don't believe we do a good job of informing parents -or anyone considering a vaccine - that your choice about whether or not to vaccinate denies the existence of my daughter, and countless others, the ones whose health depends on the choices others are making, because they can't be immunized. It isn't a choice for her or for babies, the elderly or the sick. Herd immunity is her immunity and their immunity. The choice that many parents have about whether or not to vaccinate their children doesn't just impact their child -it has an impact on all of us, especially those like my daughter. Where is that line in the vaccine disclaimer hand out?
On Immunity ponders the thinking of philosopher John Rawls, "Imagine that you do not know what position you are going to hold in society--rich, poor, educated, insured, no access to health care, infant, adult, HIV positive, healthy immune system, etc.---but that you are aware of the full range of possibilities. What you would want in that situation is a policy that is going to be equally just no matter what position you end up in." I couldn't agree more. We live in a country that allows us to decide whether or not to vaccinate our children or ourselves. We give people a choice, we give them handouts full of disclaimers or risks. But I don't believe we do a good job of informing parents -or anyone considering a vaccine - that your choice about whether or not to vaccinate denies the existence of my daughter, and countless others, the ones whose health depends on the choices others are making, because they can't be immunized. It isn't a choice for her or for babies, the elderly or the sick. Herd immunity is her immunity and their immunity. The choice that many parents have about whether or not to vaccinate their children doesn't just impact their child -it has an impact on all of us, especially those like my daughter. Where is that line in the vaccine disclaimer hand out?
Biss quotes Susan Sontag, author of Illness as Metaphor, "Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." I will tell you that I would spend all I have to buy a permanent passport into the kingdom of the well for my daughter, but until I find that passport, I am counting on you. On everyone in the healthy herd.
-Proud 22q Mom