I just read an article where the actor Peter Krause said, “The isolation that everybody’s experiencing is unprecedented, certainly in our lifetime.” Most people would read this and shake their heads in agreement. Not me.
Of course, this has been a difficult year. John and I have watched communities across the country struggling with the lackluster education their children are experiencing. We’ve watched parents fighting for their children’s educational rights. Fighting for equal access. Fighting for a seat at the table. Fighting to be heard once they are there. Fighting to belong to a community outside of their own four walls. Fighting isolation. Struggling for their entire family’s emotional and mental wellness. We’ve watched seemingly strong families give up hope.
I want to feel sad for everyone who is new to these experiences, but I’m habituated to people living with adversity.
From the earliest days of Covid, I realized there’s a lot about living with disability that uniquely prepared my family for this. We are used to living with restrictions. We are used to putting aside the things we’d like to do because the world is not accessible to everyone in our family. We know that persistence and creative thinking are essential to accomplishing most things. We are accustomed to making life and death decisions with very little guidance. We’ve spent years watching our children sit at home after school without friends. We’ve spent the majority of our childrens’ academic lives advocating for what we believe is enough access because equal access is just not a reality. We’ve spent years working hard on building relationships with school teams so that we are welcomed at the table and know that our voices and our children’s voices are not only heard, but taken seriously.
We intimately know exactly how hard it is to teach a child who is struggling.
We understand what it feels like to know that the company of your immediate family has to be enough.
We are well beyond understanding how impossible it is find a quiet moment when no one needs something from you.
We understand what it feels like to watch your child embody fear and loneliness.
We understand that the reality of knowing others are experiencing the same hardships is only temporarily helpful.
We know what it feels like to fight for and yet fail to get what others are afforded.
We are completely used to being in situations where there are zero adequate solutions.
We whole-heartedly understand the work it takes to be genuinely happy in miserable situations.
I would like to challenge you to imagine that this horrible, isolated, disconnected reality is forever the norm.
For the first time in my children’s lifetime, I know everyone can do this. You’ve lived through nearly one year of an alternate reality. So go ahead. Imagine a vaccine doesn’t exist. Imagine your children alone, especially when you are no longer alive, navigating a life with little sense of permanent belonging. Imagine thinking their future is irreparably damaged because they will never be able to catch up academically or socially.
Honestly, I’m sad because at some point this universal isolation will end and I fear its lessons will fade. I worry that those who’ve always been left behind, will watch as everyone else speeds toward normality.
No vaccine is going to cure the inequities the disabled experience every day pre-Covid, during Covid, and post-Covid.
Imagining a never ending life of isolation really isn’t the challenge I want to give you.
The question is how much of these feelings will you remember once things are better and will those memories inspire you to treat people with disabilities any differently? Will this new found ability to identify with the disabled encourage you to recognize and confront exclusion in your community?
For the sake of all the Benjamins and Sebastians in this world, I certainly hope so.
I hope you never forget how this isolation feels and I hope you strive to do whatever you can to keep others from feeling it.
I want you to take to heart, in a way you never have before, that while you’ve lived nearly one year in this “unprecedented isolation,” there are others who always have.