I typically try to sleep or read when on flights. It helps to pass the time and also helps me have to avoid awkward, unwanted small talk with the people seated near me.
On this particular flight, however, I felt inclined to break that rule. The person seated to my right was an older lady, Black like me, and she was soft spoken. So much so that the flight attendants could not hear her when she meekly attempted to communicate with them. She’d been asleep when they passed through earlier to take drink orders. Now, however, she had woken up and was hoping for a drink, and tried to say as such when they came near. But her quiet, plaintive voice went unheard. So I used my louder voice to get their attention on her behalf so that she could order her drink.
This simple act opened the door to a conversation. I would have preferred solitude, but she was a nice, grandmotherly woman whose lilting accented tone reminded me a bit of my own mother. Plus, it would be rude to shut down communication abruptly. So I engaged in dialogue with her for a few minutes, politely answering her questions about who I was, where I was traveling, and why.
“You’re going to speak at an event about autism?” she repeated. “My grandson has autism.”
“Oh,” I said. “How old is he?”
“He’s twelve,” she answered. “That’s a fun age,” I replied. “What does he like to do?”
“He really likes computers,” she stated, smiling. “He’s bashful. He doesn’t like people. Or to be around people.”
“Maybe he’s introverted,” I explained. “He might just need alone time to recharge. I’m like that. Not just because I’m Autistic. It doesn’t mean that he doesn’t like people. It just might be too much for him sometimes.”
“He’s the youngest,” she said. “My son says that he is like this because because of the immunizations. The immunizations gave him the autism.”
“No, they didn’t,” I answered. Her brow furrowed. “Immunizations didn’t make him Autistic, ma’am. Your son might believe that is the case. And there are definitely children who have had bad reactions to getting immunizations and even some children who are advised to avoid certain immunizations because of allergies or health reasons. But decades of research has not shown a single link to immunizations and autism. Nothing ‘gave’ him autism. It’s just the way he is. The way his brain works. Nothing is wrong with him.”
“The immunizations didn’t give him the autism?” she repeated blankly. I nodded. She stared at me intensely. I was a little confused. I didn’t take her, a kindly, elderly immigrant woman, as an anti-vaxxer. I figured she was just repeating what she had been told. I definitely didn’t expect what happened next.
She became emotional.
I didn’t know what was going on nor what to do. Nor what to think. I sat in awkward silence for a few moments, looking down at my lap and flapping my hands idly while the woman beside me worked to compose herself.
She laughed softly, and then said in a gentle voice, “Thank you.”
I was confused. I glanced over at her. She had wiped her face, but a lone tear still rolled down her face into one of her nostrils. I stared at that tear, which hung from her nostril and threatened to fall. It was easier than staring into her eyes…
“I made him. My son. Made him promise all his kids would get immunizations. They all did. From the oldest to the youngest. I wanted them to be healthy. And protected.”
The tear finally fell, and I lifted my gaze to her eyes. She told me her story. She was originally from a Caribbean island and was one of nine children. She grew up, married and had six children of her own who she also raised on that island. One of whom – the one who later grew up and had the autistic son – had contracted polio as a small child.
She said that she had noticed him walking funny one day when she was preparing a meal. It was during the time that there was an epidemic of polio, and his odd gait concerned her. She stopped in the middle of her cooking, called her son over, and asked him to walk some more so she could observe more carefully. And when he did so, she realized that yes, something was wrong.
Leaving her other kids with her neighbor, she put her son on her back and made the long trek by foot to the hospital. Her son was examined and was diagnosed with polio – but because she brought him in so early, they were optimistic. Her son was hospitalized for a period of time and eventually released. She was instructed how to care for him after discharge, including specialized massages she was to give him every other day and exercises he was to do. Unlike many other individuals who lost their lives to polio, he was spared. Due to medical intervention. She was grateful.
When she and her children relocated years later to the United States, she made sure that she took advantage of the proximity and affordability of medical care (in comparison to what she was accustomed to). She was a firm believer in the medical field as it had saved her son’s life. She instilled in her children an appreciation for preventive medical care, health, and wellness. Including regular checkups, blood draws, and routine screenings. Including immunizations.
I wondered how many years she had harbored undeserved guilt in her heart that the fearful experience she had with her son years ago had been a contributing factor to her urging her son to have his own children vaccinated, thus, in her mind, “causing” her grandson to be on the autism spectrum.
And now she would no longer have to harbor those feelings of misplaced guilt any longer.
All I did was provide accurate information; clear up a misconception. I did not personally change her life in any way. I was merely a conduit of information.
Information can help. Or it can hurt. How many other people are out there, in 2018, like that nice lady on the plane? Believing incorrect, stigmatizing, hurtful information about people who are neurodivergent? Not just about autism, but about other neurological differences?
Whether it’s about false “causes” of autism, eugenic notions that it is better to abort a child with Down Syndrome than to consider carrying to term, misguided beliefs about mental illness and violence/mass shootings that lead to discrimination and disenfranchisement of disabled people, inhumane “treatment” programs such as the Judge Rotenberg Center’s electric shocks that torture the disabled individuals who are unlucky enough to reside in that facility, and/or compliance-based “interventions” or any number of things… what you don’t know CAN hurt you – or at least it can hurt someone, especially if that someone is a person living with a disability. The misinformation that exists demeans people, fuels ableism, and makes the world a less safe and inclusive place for disabled people and our loved ones — and anyone who cares about equality
People always won’t be grateful to hear what we have to say. To hear our truths. This day, my message evoked tears of joy, but on another day they could instead produce tears of rage. Or indifference. Or disbelief. They could induce a fierce argument, as the other party might have equally strong opinions that differ sharply from my own. They have done so before. They will likely do so again. There seems to be no shortage of people, especially abled people, willing to “able-splain” to disabled people how we are supposed to feel and think and what we are to believe
But no matter how others take it, it is our responsibility to still share the truth. It isn’t always well-received nor convenient, nor pleasant. But it is still truth, and it must be told.
I’m hopeful that maybe that woman slept a little bit more soundly, more restfully than she has in many years. Because she now knows that her grandson is exactly who he is supposed to be, and that it isn’t anyone’s fault, but just life as it is meant to be.