As the school bus horns honk and “My First Day” signs pop up on Instagram, also comes the last whisper of summer fading into autumn. My days of bleary-eyed bus rides and locker combinations are nearly two decades behind me.
But as the air gets crisp and the store shelves fill with backpacks and colored pencils, a part of me will always be riding that little bus with the kids every back-to-school commercial forgot to mention.
The ones hoping this year’s IEP will actually be implemented.
The ones who are thinking about how to drink as little water as possible between 7am and 3pm because teaching yet another aide the bathroom transfer technique is spiritually exhausting.
The ones hoping there’s just one lunch table their wheelchairs can fit underneath.
To those kids, it’s you I cannot forget. Because in my eyes, it’s always been you who goes through the school doors with the deepest of courage.
When you have a disability, the word “courage” often comes with baggage. No one, including myself, wants to be seen as courageous for simply existing. But in our rightful effort to repel “inspiration porn,” we frequently overlook a real and powerful kind of courage—the kind required to stay afloat in an educational system that too often questions our right to be in the room.
As one of the few visibly disabled students to ever pass through my school district, I can say with certainty that even almost four decades after the Americans with Disabilities Act, navigating the mainstream public school system is akin to being dropped in the jungle.
My middle and high school years were the most difficult of my life, and I don’t think I have ever fully processed the sheer force of will it took to get “the free and appropriate public education” to which I was (allegedly) entitled.
In the end it wasn’t free, because it cost me a great deal.
I paid with a sinking stomach when I met the fourth aide in a year to whom I was expected to entrust my body.
I paid with school buses that arrived late or never came at all, while knowing such a disservice would cause outrage if inflicted upon my non-disabled peers.
I paid with the loneliness of being recognized by all but truly known by very few.
With the still echoing voice of the teacher who told me “I could do without a notetaker if I tried harder” while my weary hands throbbed.
With scavenger hunts for missing accessible desks, comically bad fire safety plans, and the secret shame of spending many early mornings hiding in the elevator instead of going to the cafeteria because sitting alone simply felt too painful.
I still have sweaty, unsettled dreams about getting lost in those hallways, dropping my textbooks all over my footplate, and being wildly anxious that my third attempt to coax my stubborn neurogenic bladder into action will make me late for history class again.
I’m often asked if it was worth it, this hardest thing I’ve ever done.
This thing that still hovers on the jittery edges of my mind and owes me a million apologies I will likely never get.
And every year, as the leaves fall and the glue sticks go on sale, somehow, I always arrive at “yes.”
Riding in the back of the affectionately nicknamed “short bus,” I quickly learned a few times over that life is not always easy, kind, or fair.
Being the little girl who had to advocate before she even fully understood what advocating meant took so much from me.
And even so, on my long and trying journey, that little girl whose orthodontia-clad smile I can still see so clearly was given an embarrassment of riches.
Among them is the friend I met when I boarded the school bus on her 13th birthday, my first day of junior high. The friend I told myself would be my reason to face that school again the next day, if I could think of no others. The one who will turn 34 this week and still teaches me about facing my fears.
Among them are my fellow disabled students who refused to let the world render them inferior and taught me to do the same.
Among them are the quiet heroes who saw me when I felt invisible.
Among them is seventh grade me, who improbably remains the bravest version of myself.
I hope she knows that I look for her every time I need strength to try again.
To every disabled kid going back to school, I see you and I love you more than you will ever know. I hope in some small way, I have paved a smoother path for you and I’m sorry for all the mountains you still must climb.
You will have moments of feeling utterly alone, but the people who see your worth will reveal themselves. Most importantly, the days ahead will reveal you.
To your parents and caregivers along for the ride, I see you and I love you just the same.
The meetings, the meticulously crafted “about me” book you made to train the latest in a string of aides and nurses, the perfect sneakers you found to fit over your kid’s AFOs for picture day, those are the things I will think of when asked about the shape of love.
That kind of love is the trail of breadcrumbs I still follow when I’m lost in the woods.
Speaking of being lost in the woods, I’d love to say I have the fabled “transition to adulthood” figured out.
But the truth is, it’s another maze of acronyms, weird case managers, and vague signage… which brings me to another truth.
Here, there, and everywhere, we will make it through together, just as we always have.
