Last week, the state Supreme Court of Wisconsin upheld the reckless homicide convictions of Dale and Leilani Neumann. Their daughter, Madeline, had diabetes, a 99.8 percent treatable condition. When she grew sick, her parents decided to pray for her instead of taking her to a doctor. The parents belonged to no specific denomination forbidding medical treatment, but had started to correspond with a controversial Florida apocalyptic ministry that advocates faith healing. As they prayed, the child died.
We fear anthrax more than flu, sharks more than pigs, flying more than driving, terrorism more than handguns, and autism more than measles.
The Neumann case provides a stark reminder that some beliefs can literally endanger children's lives. Religion and science equally fuel this kind of fear-mongering and reckless parenting. When combined with celebrity, real people get hurt.
This week, news leaked that The View, a popular daytime talk show featuring a panel of four women, is considering making Jenny McCarthy one of their hosts. This is a mistake, as it would provide a platform for a dangerous voice. Over the last decade, McCarthy has become one of the most prominent voices against vaccinations. She declared, as a fact, that vaccinations had caused her son's autism, and promoted this idea in venues aimed at mothers, such as on Oprah.
McCarthy later insisted that she had cured their son through a combination of diet and vitamins. She accuses the government of being afraid to confront "the truth" about vaccines. In the last year or so, although she now admits her son never had autism, she is still selling fear by talking about the schedule of vaccines as dangerous. She has put the full force of her celebrity to the task of convincing parents to leave their children vulnerable.
McCarthy makes the most sense viewed not through her celebrity lens, but as a fairly typical parent of a child facing a diagnosis of special needs. My son also has special needs, in his case Down syndrome, and I can tell you that the moment of diagnosis is hard and the days and months that follow are even harder. As I oscillated between hope and fear and tried to come to an understanding of my new life, I too looked for something to blame. Those powerful words, "Down syndrome," instantly transformed my life and the life of my family. I mourned for the loss of my idea of a "normal" son. Is it any wonder that McCarthy, having encountered the future laden with the word "autism," believed the myth of the vaccine and the hope for a cure? Is it any wonder that so many other parents have seized on this fraudulent accusation and related false hopes? I empathize with McCarthy, but that doesn't erase the real harm she has done.
Anti-vaccinators risk not only the lives of their own children, but also those of others who are too medically fragile to get vaccinated and must instead rely on "herd immunity." Many medical conditions, especially those which compromise the immune system (which is fairly common in the world of Down syndrome), make vaccines medically inappropriate. Happily, in a population of vaccinated people, infectious but preventable diseases have trouble spreading even to the immunocompromised. But herd immunity breaks down when vaccinations are not administered to all who can medically receive them. At that point, people who chose to refuse vaccinations endanger those who had no choice.
It's happening right now, as diseases long rendered unthreatening are roaring back into dangerous life. We've seen a rapid increase of outbreaks in preventable diseases, such as pertussis (whooping cough), measles, and mumps in the U.S. and the U.K. Whooping cough, for example, hit its highest rate of infection in 50 years over the last winter in the United States. A website dedicated to tracking the illnesses and deaths associated with the anti-vaccine movement cites over 100,000 illnesses and over 1000 deaths from these preventable diseases.
McCarthy joined this dangerous movement after her son turned two and began to experience seizures and speech delays. He was diagnosed with autism, and she seized on research out of England that linked vaccinations to autism. That research was fraudulent. In 1998, Andrew Wakefield, who had a financial stake in an alternative MMR (Measles-Mumps-Rubella) vaccine, published a study in The Lancet that argued for a causal link between the traditional MMR vaccine and autism. His study was a corrupt version of a "case-control" trial, a notoriously unreliable format, based on just 12 children with autism. Such a tiny trial, even if perfectly conducted (and it was not), could tell very little about the wider population. Multiple larger trials refuted Wakefield's conclusion; moreover, Wakefield was found to have manipulated the evidence. Wakefield was stripped of his license to practice medicine and The Lancet took the extraordinary step of retracting the article. For Wakefield and his backers, like McCarthy, it's all a sign of a conspiracy.
Meanwhile, children are literally getting sick and dying. By 2009, just when McCarthy's anti-vaccine message was reaching a peak, one study in Oregon found parents four-times as likely to skip vaccines as they had been four years before. Despite a CDC study of over 1000 children showing no links between autism and vaccines (remember, Wakefield had only 12), parents keep asking about the risks of autism. And the specific MMR-related fears about autism has bled into more generalized fears about vaccination, as witnessed in the debate over the HPV vaccine. All the evidence points to the HPV vaccine as one of the greatest and safest developments in recent medical history, but parents are afraid to take a step which would protect their children against life-threatening cancers.
Beyond these generalized health issues, and here I am writing from the perspective of a parent deeply involved in the disability community, the notion that it is worth the risk of serious or even fatal illness to avoid autism hurts people who are living with the condition. McCarthy portrays autism as a terrifying disease you can nevertheless fix with fad diets. Claims of cures like McCarthy's have led parents to feed their children bleach, buy expensive (though harmless) specialized diets, and spend tens of thousands of dollars on experimental treatments.
People with autism need support in their quest for self-advocacy and integration, not fads. Parents need communities and schools and scientifically-guided medical care that they can rely on, not to be bilked by fraudsters and fearmongers. People with autism are not victims, and they do not need McCarthy's organization to "rescue" them. What they need is the same thing all persons with disability need: a pathway to inclusion.
I don't watch The View, but I do watch the world of disability, and I know the price that we pay when dangerous conspiracy theories spread. People in general, and parents in particular, are bad at assessing risks. We fear anthrax more than flu, sharks more than pigs, flying more than driving, terrorism more than handguns, and autism more than measles. We also believe in celebrity, something that McCarthy acknowledges when she says, "It is amazing what celebrity can do if you do it with 100 percent good intention and heart." I believe her intentions are good. As parents, we want the best for our children, and for all children with special needs. But in her case, the results have been terrible.
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