Updated: Dec 10, 2020
| This is the 539th story of Our Life Logs® |
The first thing you need to know about me to understand my story: I am autistic. I was not officially diagnosed until two years ago, but my family and a few of my closest friends knew at least a decade earlier. My mother suspected this from my early years. That was the 1970s. Knowledge of autism then was not as extensive as it is now, and the psychologists evaluating me at that time said that I was “too smart” to be autistic. If they only knew, academics were the only thing in life that I was good at. In fact, I hold a master’s degree in biology. However, the social impairment that comes with autism has made finding and keeping work difficult.
One more thing you need to know: one characteristic of autism is difficulty with sensory processing. For me, as for many autistic people, that means that I can only stand to wear clothes for so long. I need my nude time; when I get home at the end of an 8-hour workday, the first thing I do is strip frantically. I’m 47 now, and despite the life skills I have struggled to learn over the years, I still cannot pass as “normal.” I have accommodations to help get through life, but what I and many other autistic people know and struggle with, is always getting those accommodations met without resistance.
All my life, I have never seemed to live in one place for very long. When the COVID-19 pandemic came, it caught me in American Canyon, California – in the San Francisco Bay Area where I was taking a course in data analytics with UC Berkeley Extension. We were about halfway through the course when the shelter-at-home order came, and we had to move online. This all came at a rough time when the temporary work I was doing with the Contra Costa Mosquito and Vector Control District had not been extended to 2020. I feared I’d be left with no reliable source of income, but thankfully Berkeley’s career resource team put me in contact with a tech recruiter. My new data analytics skills were not an exact match for what they were looking for, but close enough that I was offered a place in their training program.
This new development meant a trip to Greenville, North Carolina to my storage unit to retrieve some items I’d need. Greenville was the one city I lived that I grew to love enough to want to stay. I kept my storage unit there as an “anchor” of sorts, to keep some aspect of my life in Greenville.
Yet right away, I anticipated a problem with the trip. As mentioned, I still have difficulty with clothing, despite 47 years of getting used to it. Now, there were demands that I wear a face mask as well. I could manage mask-wearing for brief periods, such as a quick trip to the grocery store; but when I finish that errand, I would take off the mask with the same urgency and relief as I do my clothes at the end of the day. Let me be clear that I understand why face coverings are expected. While they may be difficult for me, for the average able-bodied person, wearing a mask should be an easy request to follow. Honestly, the mask requirement has done more to keep me at home than any shelter-in-place order.
Anyway, the thought of spending many hours in airports and on airplanes with a face mask on filled me with dread. So, I did some research into what my rights were under the Americans with Disabilities Act, and yes, autism spectrum disorder is recognized as one of the conditions for which wearing a face mask might not be advisable for some people. So, I set out to find that reasonable accommodation. I settled on a face shield. It covers my face, blocking my exhalations from blowing onto other people, but is not in contact with my skin – except for the headband, but that feels no worse than a hat. I was confident that I could handle the flight with a face shield.
As I began my trip, everything seemed to be going well. Subway ride to the airport – my face shield was accepted. Inside the airport – my face shield was accepted. Flight from San Francisco to Charlotte, another flight from Charlotte to Raleigh – no problem. It appeared that I had found a workable solution.
It was on the return trip home three days later that I hit a roadblock.
I made my way through the airport, face shield on, without any difficulty. It was only at the boarding gate that the gate agent stopped me and told me I had to wear a face covering. I pointed out my face shield and said, “This is reasonable accommodation” – making sure to use the ADA term so that they understood exactly what they were doing. It was to no avail, of course. They issued me a disposable face mask and it was quite clear that they would not allow me to board without it. I couldn’t refuse to board, since I had to get home, so I placed the dreaded mask over my face, grimacing and cringing as I boarded.
Another thing you need to understand about me: the reason I had acne until my mid-thirties was because the feeling of soap on my face is so upsetting that I never washed my face. Even now, when I shower, I save soaping up my face for the very last, rinse immediately, and those few moments are the most dreaded part of my hygienic routine. Now, I was being required to spend two hours with something worse than soap on my face.
I could hear flight attendants going by, offering snacks and drinks, but I was unresponsive. The whole flight, I leaned against the window, my face scrunched up into what must have been a very pained look, face shield clutched uselessly in one immobile hand.
My biggest fear, from the very beginning of the pandemic, is that face masks really will become a “new normal” – that even after COVID-19 is gone, people will say that there is still the flu and other transmissible diseases, so keep up the masks. If that happens, my life will be unbearable.
After deplaning in Chicago, I slammed the face mask into the trash can and shouted “Ableists!” loud enough to be sure those gate agents heard. I switched back to my face shield and had no difficulties anywhere in the airport or in the airport Starbucks.
But there was still that connecting flight. Hoping that my treatment on the first leg was a fluke, I showed up at the gate in my face shield. It soon became clear that it was not to be. This gate agent told me the same thing. I again said, “This is reasonable accommodation” – so they could fully understand that they were defying ADA regulations. I also pointed out that they themselves had just announced, “Some exceptions may be allowed.” They told me that what they meant by that was that they have a list of passengers with medical exemptions. Realizing I was getting nowhere with them, I boarded with another dreaded mask and took some Dramamine.
I hadn’t ever been airsick, but I took the Dramamine because I knew a side effect was drowsiness. I was hoping that it would make me drowsy enough to sleep through the ordeal – like the way people give their dogs tranquilizers before checking them in as baggage. It did not work. In the Dramamine-induced fog, I was aware only of the torment of the mask on my face.
After I exited the plane, that hellish experience behind me, the doubts came. Autism is one of those disabilities in which our difficulties tend to seem petty or trivial to those who do not have the disorder. So, we are unconsciously conditioned to second-guess ourselves. Was it really as bad as I felt it was, or am I blowing it out of proportion? It’s hard to accept yourself when society makes you think you’re crazy. That day at the airport, I assured myself that I was not crazy and had to do something to stand up for myself.
Between the flights back, I went to the airline’s website and complained about the way I was treated – making sure to point out that I had not been required to wear a mask on the two outbound flights with that same airline just three days prior. Their reply a couple of days later completely missed the point. They merely reiterated their policy. Had they been a bit more conciliatory, I would have refrained from filing an ADA complaint with the Justice Department, but they left me no choice after how I’d been treated. It’s like the gate agents didn’t even try to understand and shooed me away.
I was so shocked by this treatment because I’ve found that my face shield has been accepted as a face covering in Uber cars, by every driver I have had so far among many other places like restaurants and the subway. Still, no matter how accommodating people are, there will always be that one questioning your disability, refusing to comply or be kind. It’s a reality I’ve come to accept.
Despite my bad experience, I know most people are understanding. For the most part, my face shield is understood and accepted for what it is. Still, there are ableist people out there who don’t get it, nor do they try to. I hope my experience will open the eyes of those people. Wearing a mask seems like a simple task, but for some people, it isn’t so simple. People have sensory sensitivities and trauma. You never know what a person is dealing with. So before criticizing a face shield, think of me and my story.
This is the story of Jason Hernandez
Jason’s story is one of an autistic person’s experience with accommodations not being met during COVID-19 and the ableist mindset the country functions upon. As someone who doesn’t like the feeling of wearing clothes, he doesn’t really have a quarantine outfit. The first person he’d like to hug after all of this is over would be his longtime friend who understands autism and helps him learn to navigate the world. Without her, he would have made less progress than he has. When it’s safe to travel without facial coverings again, Jason would like to go to Greenville. He tries to go there when he can, to maintain the tie. The next time he flies, he plans to look into getting on the airline’s medical exemption list.
This story first touched our hearts on September 17, 2020.
| Writer: Jason Hernandez | Editor: Kristen Petronio |