My son, B-man or Bucky, depending on his mood, had just awoken from a 6-hour surgery. The surgeon comes to give us an adrenaline-fueled recap. I will never tire of hearing this part: He’s going to be fine. Everything is going to be okay. That pervasive melty feeling in my legs starts to fade.
The doctor tells us only one person can go in, so I push my husband out of the way. ME. I’LL DO IT! I had not seen my son since the night before and I was pretty darn excited to say “hi, what’s up dude? Congratulations on your 5th successful surgery!” I follow the volunteer down the hall.
In the past, Bucky always looked a bit angry when re-entering the world after a general anesthetic. This time he was a seasoned veteran: already conscious and breathing on his own. He starts ordering the nurses around.
This is B-man’s description of his favourite sleeping position. It involves two pillows on his lap, with his upper body flopped over the top, exactly how I imagine a mini-Batman to sleep, when he tired from the upside-down position. Since he wears BiPAP while sleeping, his face can safely be smushed into his pillows.
His assigned nurse squeals first. “Oh my gosh that’s SOOOOO CUTE!!!”
The other nurses in the recovery area join in.
“LOOK AT HIM!”
“OH MY GOODNESS DID YOU HEAR HIM!”
“HE IS JUST SO SMART!”
The nurses called him “smart” for requesting a pillow (two!), and seemed surprised that he could actually speak. I assume that his small(er) size leads people to believe that he’s much younger than his current age of 4 and a half. However, the critical thinking part of my brain was screaming.
My son’s physical condition, namely differences in his lungs and bones, have no influence on his cognitive abilities. The assumption that he can’t communicate needs, either orally, using sign language, or through assistive technology, is a false one.
Fast forward to four days later. My son and I sit on his bed playing IPad. Already in our final stretch of this hospital visit, we wait anxiously for the discharge papers. We begrudgingly start to shove toys in millions of grocery bags and pack up the car. There was one more thing on our ‘to-do’ list: the monthly RSV vaccination.
The nurse informs us the shot was going to be ready “any minute now.” When it comes to administering shots, we find a few things work well: 1) Honesty. We tell Bucky exactly what’s about to happen, no longer than 30 seconds before the shot; 2) the faster the better. No slow pokes allowed, and 2) Hide the needle for as long as possible. We are not contestants on the Price is Right. We do not need a good look at the product. Just stick it in, wherever it needs to go, while I hold onto the flailing appendages.
The nurse slowly (I mean, SLOWLY) saunters in holding a needle up towards the ceiling. After noting the similarities between the needle and Simba (obviously) I slow-motion-yelled a NO from across the room.
“Alright, we’re ready!” When it comes to needles, my son can smell them from three rooms away. He is a needle expert, a virtuoso if you will. Bucky screams. Nurse fumbles, breaking rule #2, while giving us zero opportunity to have our “needle talk” with him. The flailing limbs and persistent pleas to stop don’t help.
This procedure usually takes about 15 seconds. This time, it took a good 3 minutes. The worst part, in my mind, is that the entire ordeal could have been avoided had the nurse treated him like a plain old-fashioned 4-year old, or at least someone who was aware of exactly what was about to happen. In fact, my son’s extensive hospital stays mean he has a heightened awareness of what’s going on around him. He knows all about X-rays, blood tests, and echocardiograms. He could draw you a detailed picture of them happening all at once, to Superman, if he put his mind to it.
This hospital experience wasn’t the greatest, but it gave us an opportunity to witness ableism in one of our safe places, in a place I thought I would never see it. I’m tired of having to remind nurses and doctors and lab technicians to use discretion when speaking in front of us, because my son, inconveniently, understands everything we talk about.
My son is intelligent, observant, communicative. Our frequent interactions with health-care providers have demonstrated, multiple times, that their default assumptions reflect none of these things. I would love for those who work with patients like my son to have a more – dare I say – open attitude towards ability.
My hope is that one day, I’m not met with a look of shock when he suddenly starts a conversation, or gets out of his wheelchair to take a few steps, or asks a nurse for a pillow. I get it. All of these things may seem amazing, but imagine if these same scenarios took place with a disabled adult. Yikes! Awkward.
My husband and I are his biggest cheerleaders. We applaud every step, every bite of apple, and every new level he clears in Super Mario U. I’m not saying that strangers shouldn’t applaud him, too.
I’d prefer the applause to be for something other than asking for a pillow.