Anyone else feeling like they are living in a completely different reality than those around them? For the Spiderman fans out there – it’s like we’re Peter Parker slipping in and out of other dimensions of the universe. 

For our family of five with an 11-year-old who has multiple disabilities, is medically complex, and immunocompromised, we must remain on high alert. My son’s specialists have warned time and time again to stay masked, to avoid crowds whenever possible, and to make sure his younger brother and sister also play it safe. 

Yet many of the nondisabled, “healthy” folks around us are done with all of that. It’s been two years. Enough is enough, they say. If you are that worried, just stay home, they say.

They have “opinions” on masks: they are ineffective, they give people false reassurance, they are harmful. These opinions go against what public health experts, epidemiologists, and infectious disease specialists have researched and documented. 

While our society has turned this into a political battle, it most definitely is not. It is about public health. It is about equity. It is about disability rights. A judge in Virginia recently ruled that masking is an accommodation under the Americans with Disabilities Act, and that students can ask schools to require masking. Public health officials urge that older adults and medically vulnerable people continue wearing their masks in public. You can read more about that here. Here. And here.

This equity piece is where the multiverse gets all glitchy and messy. While families like mine must remain vigilant: avoiding restaurants, birthday parties, and the like; those around us are seemingly doing all of the things. When mask mandates were dropped, we had to put our guard up again. Evidence shows the swiss cheese model works: vaccines, masks, social distancing, ventilation, hand washing, etc. – the more layers we put between ourselves and the virus, the safer we are. But when the medically vulnerable are the only ones masking, a huge layer of protection is missing. 

Many people with disabilities are more at risk because of medical comorbidities. Some have a hard time keeping a mask on for many different reasons. Even though my son has been vaccinated, his medical complexities mean that vaccine efficacy fades much faster than his peers. There is a good chance that even after 3 shots, he is essentially walking around as if he is unvaccinated. 

Many students with disabilities missed a year or more of school. Some are still at home, because the risk is still too great. So when those around me complain about their children missing out on a “normal” childhood because they have to wear a mask to school or to the movies or wherever, I find my faith in humanity slipping away. 

When disability advocates bring these pandemic inequities up, we are shrugged off. We are told we are overreacting. We should just continue keeping our kids home, as if hunkering down at home for years is comparable to wearing a mask in indoor, public spaces. There is no empathy. Our fear of what happens when we put our guard down or take a break from the fight has been proven to be completely founded.

The universe I exist in – we’re still in the thick of this. While everyone else is celebrating, we’re pleading to not be overlooked. We’re begging those around us to take our needs into consideration.

While Covid is an inconvenience for most people, most children – it is life threatening for others. A simple cold has left my son hospitalized with pneumonia for many days, many times. What would Covid do? It might be nothing. Or it could kill him. Why take the chance in finding out when there are simple ways to prevent the spread? Why don’t others care?

I want to be angry. I want to fight. But I am just heartbroken. The abhorrent ableism I’ve witnessed over the last 2 years has shred me to pieces. There is a heaviness I feel ALL. THE. TIME. 

All of this talk about inclusion is just that: talk. 

We can do better. I implore us all to dig deeper. Practice empathy. Look out for those around you and LISTEN. Really try to understand how your actions and beliefs impact your fellow humans. 

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