I’m Autistic. I’m Not Anti-Masker Ammo

I’ve noticed that a few anti-maskers on social media are using people with disabilities to argue against the adoption of face masks during the COVID-19 pandemic. I’d like to dispel a few myths.

This might be useful to you if you are:

• Genuinely curious about masks and disability
• Genuinely concerned about the well-being of disabled people
• Interested in having sources to cite when you refute nonsense about disabled people

While this piece isn’t aimed at people with severe disabilities as its primary audience, people with these disabilities are still welcome to read it and should know that I care. But more on that later.

Are my sister and I potential victims of masks?

It occurred to me that anti-maskers might look at my sister and me as perfect examples of people who might be victimized by masks.

I have:

• An autism diagnosis
• Considerable support needs & limited independence due to autism
• Sensory sensitivities, including tactile issues that mean I usually need the tags cut off my clothes
• Unusually sensitive skin; as a baby, my parents could only dress me in 100% cotton or I would develop a rash
• Anxiety problems, sometimes severe
• Panic disorder, including a panic attack a few weeks ago
• A history of depression
• A worse-than-average fear of medical situations

My sister, Stella, has:

• Down syndrome
• Considerable support needs & limited independence
• A severe medical phobia (I’m talking about a history of passing out, screaming, & big-time acting out, even though she’s normally very polite and well-behaved)

Both of us rely heavily on our parents. Both of us consider making macaroni & cheese to be a significant achievement (and don’t ask us to do the dishes afterwards). Both of us need anti-anxiety medication and lots of intense comfort & one-on-one attention from Dad if a medical professional comes near us with a needle.

How we handle the mask situation

Stella and I almost completely stopped going into public when COVID came to town. We limited ourselves to neighborhood walks at a significant distance from other people.

But at different points, both of us needed to go out.

Me

In June, my doctor told me via video call that I needed to come in for needle time. (We needed to test whether I had a health problem.)

Naturally, I freaked out. I took anti-anxiety medication. My dad gave me two masks on top of each other and drove me to the doctors’ office.

I did get lightheaded immediately after the procedure. I said I might faint. The nurse said I looked pale. They helped me walk to a place where I could lie down.

I wore the mask 90% of the time, even while I was feeling faint. I only took it off briefly so I could drink the cold water that a nurse gave me.

Then I put the mask back on. I knew we were in a place where plenty of sick & vulnerable people stopped through. And I kept the mask on while I stumbled out the door with my dad at my side.

I finally took the mask off in the car. My skin had big red indentations where the elastic had pulled the mask tight. And if I had to go out again, I would wear the mask again.

That was my most recent time in a public building. The next time I go into public, I will be wearing a mask (unless they have a vaccine by then and it’s no longer needed). No matter how uncomfortable I am.

Stella

Perhaps you read my story and thought “well, she has a high IQ and she took anti-anxiety medication, so she could deal with it.”

Well, when my sister had to go into public, she had neither of those things to help her.

Masks have always scared her. As an infant and toddler, she endured numerous surgeries, not knowing why these painful things were happening to her, not knowing why the people in masks hurt her. I remember a time when we all got shots as a kid. I knew when it was time for hers, even though she was in a different room, because I could hear the wailing.

I hand-sewed some masks for the family at Mom’s request. When I felt a little under the weather, I lay down on the family couch with a mask on, hoping for her to see it and start thinking of it as normal. She’d touch a mask if I gave it to her to play with, but she wouldn’t put it on. When Mom suggested it, she turned pale.

And then Stella was required to go in public. You know what she did?

She put on the mask.

We talked to her about it. We used ability-appropriate language to explain that she needed to wear a mask to keep herself and other people safe from COVID. So she wore the mask.

Even though masks scared her. Even when she had to face another fear (a big dog barking at her in public). She wore the mask and kept it on until our parents said it was okay to take it off.

Why?

Because we care.

We care about our own health. We care about each other’s health. We care about the health of our community, including the people we haven’t met, including the people we’ll never met.

Our masks are an expression of caring. Even though they’re not perfect, even though they’re not always easy, we wear them.

Scientific research shows that people who score higher in agreeableness (a trait associated with kindness and helpfulness) are more likely to choose to wear masks. Stella and I care about our communities, so we put on those masks.

And actually, we are potential victims

In New York, people with intellectual and developmental disabilities are over twice as likely to die of COVID-19. And nearly 2/3 of COVID-19 deaths are disabled people.

That’s scary.

Stella has been hospitalized for pneumonia twice. When she gets colds and other respiratory infections, they tend to last for weeks or months. People with Down syndrome, her included, tend to have weaker immune systems and greater vulnerability to respiratory infections.

If she gets COVID-19, things could go wrong very quickly.

People with disabilities who can’t wear masks

I'm #AskingAutistics who are professionally diagnosed: Can you wear a face mask if/when you go out? #ActuallyAutistic

— Luna Rose is staying home! (@MissLunaRose) July 25, 2020

Some people have major problems related to sensory processing and anxiety. I know this; after all, I have issues in both these areas. In <1% of the population, these issues might be insurmountable. And I don’t believe these rare cases deserve shaming.

No, they deserve protection. They need us to take extra safety precautions because they cannot.

Some of them need carers and helpers to visit to manage daily or weekly tasks. Some live in group homes, where illnesses can spread quickly. This makes them vulnerable.

Don’t the rest of us owe it to them to do our best?

I believe that we, as community members and as decent human beings, owe it to others to try every reasonable thing we can do to keep each other safe. That means trying to wear a mask even if it’s not easy (like both Stella and I have done). It also means staying home when possible, washing hands, and doing whatever you can do to slow the spread.

And those people who have disabilities so severe that some safety measures just aren’t possible? They are counting on the rest of us for protection against COVID-19.

So even if I had a full-blown panic attack in a public place, I would tough it out and keep that mask on until I could escape to the car, because I care about keeping other people safe!

Final thoughts

My sister and I will wear our masks every time we go out. This is (a) because we can and (b) because we care.

Do you care?

Do you care about me, the autistic girl who writes stories and wants to live with her sister forever?

Do you care about my sister, a music-loving optimistic girl with Down syndrome whose ability to breathe could be destroyed by an illness like COVID-19?

Do you care about the many people with disabilities who are much like us, some of whom are living in group homes and institutions?

If you care, then do what you can to protect us.

• Avoid going out in public when not necessary.
• Get essential supplies via pickup.
• Wear your mask whenever possible in public.
• Skip optional haircuts, meals out, and outings unless scientists (not politicians or Facebook friends) have said it’s OK in your region.

Yes, it’s inconvenient. But inconvenience is worth saving people’s lives.

Stella and I have tackled huge fears and put on our masks anyway. We have sacrificed freedom, social lives, haircuts, and more. And we would do it again in a heartbeat, because we believe in protecting ourselves, each other, and our communities.

So, are you going to use us as an excuse to throw a tantrum about how you don’t want safety measures to happen?

Or are you going to encourage others around you to do everything possible to keep our families safe?

Not trying to be dramatic here, but in this case there are literal lives hanging in the balance. Potentially my sister’s and mine.

We care about others and we are willing to show it. Are you?