The widespread inequities and ableism that 2020 has brought to the surface is palpable.

Palpable – a feeling so intense it seems tangible. Do you feel it? How is it manifesting inside of you? Anger? Frustration? Sadness? Exhaustion? All of the above?

Perhaps the worst part is that the root of much of this negativity is the those near and dear to us.

They are dismayed that they have to start staying at home again. They are beside themselves because Thanksgiving will look different this year; 40-somethings might have to cook their own turkey for the first time. Fellow parents are frustrated that schools are reverting to distance learning or delaying plans to return to in person. Sports are being cancelled. Restaurants are reverting back to take out only.

I’m trying to practice empathy, but I’m mad as hell. 

For those of us who are high risk or living with a loved one who is, nothing has changed since March. Putting our guard down in the midst of this pandemic could equal death.

I spent this summer explaining to our three children why they couldn’t go to the pool while they saw friends walking there. I’ve spent the last nine months enduring tears and tantrums as we drove by crowded playgrounds to go for another dreaded hike. My kids can’t understand why we’re in this nightmare that we call distance learning when their friends are in school. 

I’ve been forced to explain that things are different for us because of our oldest’s disability over and over and over again. As if we didn’t feel that when the world wasn’t falling apart, now it is a near daily conversation. Now my children associate disability with sacrifice and exclusion. More alike than different is such a laughable concept right now.

So if you’re expecting some words of encouragement about soccer being cancelled or holiday plans being modified and you get radio silence on the other end, think about why. Check your privilege. 

The reason we have to go back to a lockdown is because what you’ve been doing is irresponsible. Just because you haven’t gotten sick does not mean you aren’t participating in risky behavior. We, as a country, have been playing COVID-roulette and we lost. We’re paying the price with hundreds of thousands of lives lost.

Be thankful you got some reprieve from this global nightmare. Keep in mind many of your friends didn’t.

As we fall deeper into this darkness, please remember that your friends with intellectual and developmental disabilities are 3 times more likely to die from COVID than you are. And because of rampant ableism and blatant discrimination they are less likely to get the care that they need under regular circumstances, let alone in a health crisis.

When you’re feeling down that the holidays won’t look the same; I challenge you to think of those around you. Think about lying awake at night worried that if your kid were to get sick, they would be denied care because they have Down syndrome or cerebral palsy or some other condition that puts them at higher risk of dying. Think about not getting the medical supplies you need for everyday life because of supply chain issues. Think about having to hoard certain foods because aversions mean your child only eats 3 specific things. Remember that many of us have had no reprieve since this began – no summer camp, no playing with friends in the neighborhood, no socially distanced gatherings outside.

Let’s not forget that there’s also been no break for our medical community. Doctors, nurses, aides, and staff are risking their lives every day. Every time any of us have a woe is me moment about staying in, we should be forced to read one of their harrowing stories from the front lines.

So please, let’s step outside our bubbles and recognize this is so much bigger than us; do what’s right for the greater good.

One thought

  1. Thank you, Erin! I think it is extremely important for those who are out and about to know that, while some activities are unavoidable, and some are relatively safe for most, many, way many others are plain Covid roulette as you mention. Nobody “needs” to go out to eat indoors in a restaurant. Or “needs” to go to a bar. Or, or, or.

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