Editor’s Note: Elsa Sjunneson-Henry is an editor and author whose work focuses on the voices of disabled creators and characters and the experience of disabled Americans. Her essays have appeared in The Boston Globe, tor.com and elsewhere. The views expressed here are her own. View more opinion on CNN.
“Oh, we’re not planning to vaccinate.” These are the words a friend says to me in the midst of a conversation about their impending child.
I silently count to ten.
“How come?” I ask, trying to keep my voice light and airy. Trying to pretend that I don’t feel as though my friend has verbally slapped me across the face with this breezy declaration.
Their answer doesn’t really matter. I’ve heard dozens of reasons. Autism, the world is safer now, the government is using vaccines as a way to get nanobites into the populace, vaccines are just a moneymaking scam. Or, as the wife of White House communications chief Bill Shine tweeted (amid a measles outbreak) recently, childhood diseases like measles “keep you healthy & fight cancer.”
No matter what any of these people say about vaccines, I personally know they’re wrong.
In 1985 my mother was exposed to German Measles due to a failure in herd immunity. Herd immunity is created when the “herd” is vaccinated to the point where the disease, infection, or bacteria has nowhere to go, and no hosts to hide in. My mother remembers getting a rash all over her body on Valentine’s Day and being sick for a week. She didn’t know what it was. She didn’t know she needed her MMR vaccine booster, as they weren’t standard at the time (as they are now). The other thing that she didn’t know? She was pregnant at the time. With me.
As a result, I was born with Congenital Rubella Syndrome. I had cataracts in both eyes, a heart defect and hearing loss, plus a handful of other weird symptoms that I would find out later are classically CRS related but didn’t seem so at the time.
After dozens of surgeries, I have a clean bill of cardiac health, I see out of one eye (not terribly well, I’m legally blind), and I wear bilateral hearing aids.
But I’m healthy. And not every fetus exposed to CRS gets to say that. Exposure to rubella in the womb can have many side effects – the worst of which is death. The MMR vaccine, which protects against German Measles (also known as rubella) also protects against measles, which is more severe than rubella, and mumps.
Over the last few years, every time it becomes “time to get your flu shot” season, and every time a new measles outbreak happens, I find myself in an awkward position. On the one, hand, I feel the need to show up in Facebook threads, to hop on Twitter and to talk about why it’s so very important to vaccinate.
On the other hand, I’m a proud disabled woman, and I worry that the perception that I am fighting so hard to prevent the disability I have means that I hate myself, the body I have and the life I live.
It should be noted that this is very much not the case.
Threading the needle of not hating myself or my disability but finding the source of my disability utterly reprehensible has been a difficult one, but I’ve found it. I’m a strong believer in the need for the immune herd. I love the life that I have. But I don’t believe that anyone should have to live a disabled life – let alone lose a baby – because of bad science and a wrongheaded disbelief in vaccination.
Especially not when one of the most prevalent excuses for not vaccinating itself comes from a deep-seated hatred of and lack of understanding about disabled people.
In 1998, Dr. Andrew Wakefield and his colleagues argued that there was a link between autism and, specifically, the MMR vaccine which prevents German Measles. His paper was later retracted, as was another popular paper which continued to support this argument.
But with frequency, people tell me that vaccines will cause a disability in their children. They tell me the vaccine that prevents my disability and the deaths of other people and their children is just too dangerous. Because it causes a different disability.
It’s just not true. And that’s one slice of what ableism looks like.
The vaccination debate isn’t formed around being supportive of living people or protecting the herd. It hasn’t been formed around real dangers.
It has been formed around the idea, held by many, that having a disabled child, an autistic child, is the worst thing that could ever happen to you.
Measles is the leading cause of vaccine-preventable deaths in the world, according to Dr. Paul Offit’s book, “Vaccinated.” What that means is that people are willfully putting others at risk of death because they think autism is a worse fate – and therefore worth that risk that others might die.
It’s selfish. It’s cruel.
And the danger is invisible.
When I think about my mother – about what she went through to bring me up in this world – I think about the fact that she had no idea that she’d been attacked by a disease that had harmed me. A disease that could have killed me in utero. A disease that gave me multiple disabilities.
And as many like to remind me, I’m one of the more abled people with my condition. Other consequences of rubella in utero are developmental disabilities, more severe heart conditions which can result in death, deafness and blindness, and of course, death.
It isn’t just those fetuses that we have to protect. It’s the people around us, too.
I’m pro-vaccination, but I know that not everyone can be vaccinated – so the herd must protect those who cannot be from measles, a disease which one study shows may (in addition to in utero consequences) erase your immunity from previous childhood illnesses like chicken pox.
Not only did I grow up with the specter of rubella in my heart and behind my right eye, but I also grew up with a father living with a terminal illness. I cannot imagine the consequences for him if he’d contracted measles.
I think about that every time there’s an outbreak, too. I think about the fact that it’s not just an ableist decision not to vaccinate – it’s a selfish one. It’s a decision that doesn’t consider the consequences for other people.
I wonder how many people right now are parenting children who have measles and don’t even know it.
I wonder how many people out there as adults haven’t gotten their MMR booster – or don’t even know they need one.
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I wonder how many more people like me will have to speak up about what it’s like to live in a world where we feel like Cassandra, pointing out the doom and being told that we’re “overreaching.”
I wonder these things, and I hope that the tide turns, and that we remember that we came close to killing measles once, and we can do it for good if we work together to strengthen the herd.