Baby Iz versus Pandemic Iz[image: Two photos: Left: Iz as a baby wearing overall made from marbled green fabric; right: Iz right now wearing a face mask of the very same fabric.] We're several months into mandatory pandemic face...
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| Baby Iz versus Pandemic Iz [image: Two photos: Left: Iz as a baby wearing overall made from marbled green fabric; right: Iz right now wearing a face mask of the very same fabric.] |
We're several months into mandatory pandemic face masking, and my son still can't wear a mask. It's not for lack of trying; he knows he's supposed to wear one, and we talk about how they help protect people from COVID-19 and why it is a deadly and contagious virus. When I put my mask on, he puts his on, too. And then, because the feeling of a mask on his face is intolerable for autistic sensory reasons, he takes that mask right off again. I don't know if he'll ever be able wear a mask for more than sixty seconds.
And this is why I am highly irritated by parents of autistic kids saying that “if my kids can do it,” then other people can’t complain about wearing masks: It sets a dangerously ableist precedent for forced mask compliance. And for those arguing, “He's talking about denialist maskholes, not making other autistic and disabled people to wear masks,” you don’t understand how compliance contagion works in the autism parenting sphere, or how stories like this get weaponized by ABA providers and others who work with people like my son. This example will be used to force autistic people to wear masks. And I'm pissed about it.
And yes, of course, some autistic people can wear masks given practice and patience. But others will never be able to, for a variety of reasons (some of which I wrote about in the Washington Post a couple of months ago). Still other autistic people totally get why they should wear a mask, while simultaneously struggling with wearing one:
If wearing a mask is hard for you, if it fucking sucks and you hate it but you're doing it anyway because you understand the evidence and importance, you're not a bad person and you're not making it up or imagining it. I get it.
— Emily Paige Ballou (@epballou) July 14, 2020If you are responsible for supplying an autistic person's masks, then it's a good idea to try them on yourself, first, and try to determine if they are scratchy, or rough, or pull in weird ways. I personally can tolerate masks that go over my ears, but dislike those that cinch my skull. Gaiters may work for some, but they are also more permeable than a face mask and so reduce protection. Other autistic folks find that mask brackets help reduce a mask's sensory assault. I tend to go with the standard blue disposable medical masks: They go over our ears, the interior is soft, and Leo can put them on himself. But the ear straps do break easily, so I always have a backup mask with me just in case.
Another mask stressor for us is that our county now fines people for violating pandemic mask guidelines. While California state law gives people with I/DD an exemption from mask wearing, It's usually clear that Leo's not wearing a mask because he can't, as when we're in public I have one on though he doesn't. But I still worry about law enforcement making first-glance assumptions, and that leading to an encounter in which my son's behavior might be misinterpreted.
I am also upset about jerks using fake ADA cards to get out of wearing masks: It's such a callow, ableist dodge, as well as total bullshit, and here's why: The U.S. Department of Justice says, "The ADA does not provide a blanket exemption to people with disabilities from complying with legitimate safety requirements necessary for safe operations." This means that while the ADA does say disabled people need to be “reasonably accommodated” when working with employers, public businesses and the government, it does NOT allow mask exemptions "without replacing it with another measure in line with public health requirements.” No one gets to go maskless if doing so endangers themselves or others.
And last in my list of mask grievances: maskless joggers who run right through other people's social distancing bubbles. Doing so is a blatant dick move as well as a health code violation. It shouldn't matter that taking the time to safely distance interrupts an exerciser's rhythm or heart rate or whatever else they're tracking. This is a pandemic, we're all having to make changes for the greater good. Pull up your mask for five seconds, run around the other people if possible, or stop for five seconds until you can pass the other person safely. FFS.
We're handling Leo's inability to wear a mask by diligent handwashing and application of hand sanitizer, and by avoiding any spaces in which safe social distancing isn't possible. To be very clear, safe social distancing means:
At least six feet between us and anyone elseBeing outdoors, away from enclosed spaces with shared or recirculated airIdeally, a good breeze Those last two are important because we're learning that good ventilation may be as crucial as hygiene in preventing COVID-19 transmission. And for us, this mean we are taking lots and lots and lots and lots of hikes in remote local areas, in open, breezy spaces with wide paths. (Shout out to Peninsula Open Space, whose maps now highlight trails wider than six feet in bright green.) With the exception of essential medical appointments—in which all staff take maximum precautions—Leo doesn't go indoors except in his own home.
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| [image: Leo and his dad, seen from behind, walking down a trail to a cove.] |
I’m relieved we have safety measures besides masks, because it’s crucial to keep my son healthy. Research indicates that people like Leo who have intellectual and developmental disabilities (I/DD) are four times more likely to get COVID-19, and twice as likely die from it, which is scary AF.
I am also terrified at the thought of my son and people who share his disabilities being hospitalized under pandemic conditions. Leo struggles with hospital environments, even in ideal times. He needs full time, 1:1 support, and while our state of California allows people with I/DD to have support people stay in the hospital with them, this isn't yet universal. And even if one of us were to stay with him, pandemic safeguards and protocols would make that experience exponentially more stressful and fraught than usual.
I am also terrified at the thought of my son and people who share his disabilities being hospitalized under pandemic conditions. Leo struggles with hospital environments, even in ideal times. He needs full time, 1:1 support, and while our state of California allows people with I/DD to have support people stay in the hospital with them, this isn't yet universal. And even if one of us were to stay with him, pandemic safeguards and protocols would make that experience exponentially more stressful and fraught than usual.
And even though Federal civil rights prohibit medical rationing and discrimination against people with disabilities, if hard choices need to be made about who gets that ventilator, I worry that my son may be denied care because of negative stereotypes about disabled people's quality of life, as recently happened with the death of Michael Hickson. Not being able to wear a mask is a minor worry, by contrast.
I am bummed that masking has become a fraught issue with bombast on both sides: Those who refuse to wear masks for "personal freedom" or "I don't believe in science" reasons, and then people who emblazon their cars with "Mask It or Casket" slogans, and insist that anyone who doesn't wear a mask is a selfish asshole or doesn't understand how masks protect people from the coronavirus.
So, my plea: If you can wear a mask, please please PLEASE do. If you can't, please protect yourself by social distancing and hand-washing. And if you see a dude not wearing a mask and he's not close enough to imperil you, leave him alone. You might be looking at my son.
