Too much responsibility? Or just enough?

Last year, a high profile thinker with a gigantic platform shared in a post with very little nuance that their mother had been disabled and they felt robbed of their childhood. Mom’s limitations had required them to grow up too fast. The comments were full of amens from other adult children of disabled mothers.

Up to that point, I felt super confident I was following my kids’ leads and that their independence was a positive thing for them. That post, shared with me by another disabled mother who was shaken by it, shook me a bit too. I told my friend it was too reductive to apply to disabled parents across the board and ranted about the irresponsibility in the way the sentiment was expressed. Their experience is their experience, but parenting is fraught for disabled mothers. Thanks a lot for the help.

Yesterday, the Toothless Wonder asked to go inside the market and buy something on her own. She said she wanted to practice going through the line and checking out by herself. She’s 7.

I suggested we go in together and I just leave her alone. “No, I already know I can do that. We’ve done it before. I want to walk in and out alone.”

So yesterday I drove to the market, parked along the curb so she didn’t have to navigate the parking lot alone, and listened to music while she went in and bought $7 worth of jelly beans from the bulk bin, which I consider a one-up to buying something off the shelf because she had to bag it and bring the number to the cashier. 😂

“Look, Mom! I did it! Now when we have to stop for something simple, I can just run in if it’ll be quicker and easier for you!”

My mind went right to that aforementioned post. Does my kid feel obligated to make my life easier? Am I giving her too much responsibility?

No, I’ve decided. Definitely not. I’m raising an independent, helpful, thoughtful child. She makes us all toast and eggs for breakfast because she wants to. She unloads my chair from the car sometimes because she wants to. She will probably go into the store later to buy butter for me because she wants to.

Disability caused me to grow up too fast. But I listen to my kids well enough to know where that line is for them.

The things I can’t control.

I started sharing stories on Facebook about my strange, uncomfortable interactions with nondisabled strangers about 10 years ago. At the time, there weren’t a ton of people doing that, and my audience was mostly friends, family, and acquaintances, all people I had at least met in real life. I shared for the entertainment factor—dark humor is an essential ingredient in the Thriving While Disabled special sauce—and because it was a safe, acceptable way to vent, often indirectly to people who’d put me in awkward situations at one time or another, themselves.

The comments were a predictable combination of outrage, sympathy, apologetics, and jokes. Every so often, I’d get a comment or direct message of thanks or apology from a particularly self-aware person who saw reflections of their own behavior in my stories. Most of the time, a disabled person would share a related story. That’s how I knew sharing was more than glorified public ranting and journaling. People were learning from and feeling acknowledged by my stories. It all stayed on Facebook, primarily. I didn’t go through my day expecting or consciously bracing for the kinds of interactions I wrote about, the ones with undertones of pity, condescension, entitlement, and fear.

When I moved my home base to Instagram four or so years ago, I found crowds of disabled folks telling the same kinds of stories and offering a new space for commiseration, analysis, and validation, and nondisabled folks genuinely looking to learn.

As time went on and I dug deeper into what it means to survive society with a visible disability, I noticed patterns in my stories and started to feel angry about their subtexts. I overcommitted to ideals of justice and fairness in situations over which I had no control, and lost my ability to roll my eyes and move on with my day, my resilience. I placed intellectual and emotional limits on myself by setting rigid expectations and criteria for acceptable interactions with other people, and found myself constantly either disappointed or preparing to be disappointed. The result has been increases in inflexibility, emotional fatigue, self-consciousness, defensiveness, and anxiety.

I think it’s healthy and beneficial to give a voice to our experiences, especially when they’re not those of a majority. But as the collective voice gets louder in spaces like Instagram and we all scream in what can easily be mistaken for unison, I start to feel swallowed by it. Maybe not everyone does, but I do. What used to help me feel seen has started to fade my personality and my unique ideas, as the subtlety and nuance of individual interactions are lost for the mass narrative. Even when I think I’m clear about the way I see things, my thoughts are often read as though they fit the group story. It creates dissonance between my actual in-the-moment feelings and the way I talk about my experiences. As someone who values personal consistency, that’s really uncomfortable. It’s not working for me.

I’m starting to untangle the angst that doesn’t serve me and moving ahead with a spirit of curiosity, because constantly analyzing my trauma and feeling exasperated steals my joy and saps my energy for things I enjoy. In his MasterClass, David Sedaris talks about creating opportunities to mine new stories. Good stories don’t come when all the characters are comfortable a hundred percent of the time—they come when a person acts on assumption, says something outlandish, does something socially unacceptable, etc.—and I’m set up beautifully to experience some of the nuttiest of human social behaviors. I’m a writer. That’s gold for me!

It’s taken me some time to put this puzzle together, and I’m sure there are more pieces to snap into place yet, but I look forward to more ease and harmony and laughter as I invite discomfort to stock me up on good stories without ruining my day.