The Exhaustion of Being “Othered”‘
A friend of mine was recently on an airplane with her daughter. This was an international flight, a long one, and they had just settled into their seats. My friend looked over to find a girl filming her daughter who has limb differences. My friend spoke up, asked the girl’s mother, “Could your child please delete that video?” The woman complied. Of course she did. But was there an apology? No. My friend did not demand an “I’m sorry,” because she was tired and they had eight hours ahead of them in these seats next to these people. You pick your battles.
None of this is surprising to me. We get it all the time with my son Charlie because he uses a wheelchair and a speaking device. I’ve had kids laugh and point. I’ve had grown men complain when we queue up to board before other passengers on a Southwest flight. I’ve had cars cut in front of the special needs bus as Charlie is being loaded in our driveway because they can’t possibly wait the extra minute to get wherever they are going. When I emailed his pediatrician to request a visit because his hip was hurting, I had a nurse tell me to see if he had any trouble walking first. She did not take the time to read his chart to know that he does not walk.
This is the stuff of every day for those with disabilities and their caregivers. It’s a fight. We are called advocates for a reason. And I would do anything to make Charlie’s path through life easier. That doesn’t mean it doesn’t get to me when things like this happen. There is a bone-deep weariness over things not changing.
During Covid, Adam Grant wrote an article for the New York Times in which he described this very feeling. He called it languishing. According to Grant, “Languishing is a sense of stagnation and emptiness. It feels as if you’re muddling through your days, looking at your life through a foggy windshield. And it might be the dominant emotion of 2021.”
For most of the pandemic, after the initial panic had passed, we all felt this send of exhaustion. We were tired of wiping down our deliveries with Clorox wipes and fighting for over-the-counter Covid tests and getting the call that someone in our circle had been infected and therefore we needed to quarantine. We wanted things to get better and we wanted it now. The impatience led to exhaustion when things just kept not changing.
But eventually, just when we thought it wouldn’t happen, life started to normalize again. We got shots and then boosters and then schools and restaurants and music venues re-opened and public gatherings went from zero to outside-only to anywhere at any time. It was a gloriously miraculous thing to leave your mask at home and walk out the door.
And we all felt these things collectively – the tiredness and the despair and then the uplift of joy. Society rode the same mental and emotional roller coaster ride. We were all buckled in together.
One of the hardest parts about disability is the feeling of being on the outside. The world is riding a different ride and you are on the outside. This is the languishing. It is exhausting to have to continually explain your existence or your loved one’s existence to others.
Sometimes, like for my friend on the plane, that sense of languishing wins. But that doesn’t mean she will stop fighting. None of us will stop pushing for change. But it doesn’t mean I don’t wish society could reach a tipping point of understanding in which empathy becomes natural and we can all ride this life together.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
