When the School Photographer Offered to Hide My Son's Wheelchair
Ever since I was a little girl, I have looked forward to taking school pictures every fall. That is still the case even though I am a parent now. I eagerly anticipate getting copies of my own children’s pictures each year. I adore seeing how much my kids have grown and matured over the years and how they express their personalities through their facial expressions and clothing.
I fondly remember how my mother would wash and blow-dry my and my sister’s hair on the night before every picture day. Then the three of us would take turns sitting cross-legged in our nightgowns before the TV in the family room as our mother painstakingly rolled our long hair with sponge curlers into neat rows on top of our heads. Later that same night, I would toss and turn in bed from the discomfort of the sponge curlers pulling my hair tight and from the hard plastic of the clips holding the sponge curlers into place, digging into my scalp. However, the excitement of getting dressed up the next day always made the pain bearable somehow.
On the day of the school photoshoot, I would wear my current favorite dress that I had set out the night before, and proudly smile into the camera while feeling like a model with my fancy curly hair framing my face. The process was the same each year until high school. Likewise, when my daughter was in elementary and middle school, she allowed me to carry on those same traditions with her, too, until dressing up and wearing sponge curlers lost their appeal once she started high school as well.
For my son, Jacob, picture day is another story entirely. The urgent need to capture and retain his image drives me with relentless desperation. It is not a fun annual event that takes place each school year as much as it is proof that Jacob is still alive and doing well. You see, my son was born with a terminal and degenerative disorder called spinal muscular atrophy (SMA) type I. There is no cure for this disorder, but there are new treatments, like SPINRAZA, available to slow down the rate of the disease’s progression.
As a result of Jacob receiving SPINRAZA, and because of the exceptional medical care he has received over the years and the precautions taken to limit his exposure to germs, Jacob has miraculously outlived the neurologist’s initial prognosis by 10 years. However, the eventual outcome hasn’t changed. So, each year that Jacob continues to thrive and meet new developmental and academic milestones not previously expected is a year worth celebrating and one that I don’t want to forget.
This year, Jacob is in seventh grade. That is a huge accomplishment considering he wasn’t supposed to make it to his second birthday — which is why, on the morning of picture day this year, I was feeling extra blessed to be able to get my son ready for the big occasion. That morning, Jacob watched as I pulled shirt after shirt out of his closet for his perusal from the comfort of his medical bed. After reviewing all the choices displayed, Jacob verbally indicated his preference for the day — “The red one.” Red is Jacob’s favorite color. I love that he conveys that fact through his choice of apparel.
Afterward, Jacob’s home health nurse reclined the medical bed’s head to do his morning hygiene routine, followed by his respiratory treatments. Meanwhile, I got his wheelchair and G-tube feeds ready for the trip. When we were ready to go, Jacob and I counted to three together before I lifted and transferred him to the wheelchair waiting in the hallway outside his bedroom door. As the nurse and I strapped Jacob into his wheelchair, he happily asked, “Am I going to make new friends today?” Tears pricked my eyes when I told Jacob that the world was still sick (i.e., COVID-19), so we wouldn’t be able to meet any other students today. Jacob’s smile momentarily faded away, but thankfully it soon reappeared once we left the house to head to the school campus.
As a safety precaution, because a common cold can be fatal to Jacob, the middle school administration arranged for Jacob to be the first student to get his picture taken that day. We arrived at the designated time, despite the stop-and-go rain shower slowing down traffic to a crawl. Nevertheless, not even the bad weather could dampen our good moods as we parked and then headed into the school cafeteria that housed the makeshift photo studio. My daughter and Jacob’s nurse had to stay in the van because the new pandemic protocols that the state put in place limits the number of people that can congregate in the same room at one time. So, the photographer, Jacob, and I were the only ones in attendance, and we got right down to business.
Let me preface this next part by saying that I am not upset with the photographer. He was kind, considerate and professional throughout our entire interaction with him. I simply got caught off guard by the question he asked me.
“Do you want me to hide your son’s wheelchair? We can drape a sheet over it or something if you want.”
No one had offered something like that to me before, so it stunned me into a confused silence for a minute. Eventually, I smiled and politely declined his offer, but inside, something hot and painful began to burn in my chest.
The question hurt my heart. Don’t get me wrong, I know why I was asked the question, and I can even appreciate how awkward it must have been for the photographer to make in the first place, but that doesn’t settle my disquieted soul. Maybe it wouldn’t have bothered me so much if this wasn’t already a touchy subject for my son and me. I love Jacob’s wheelchair because I see it as a tool that allows my son to access the world around him. Unfortunately, Jacob hates his wheelchair. It angers him that he cannot walk on his own two feet like other kids his age can, and he constantly tries to wish away his disabilities and limitations.
The wheelchair doesn’t define who Jacob is, but it is part of his life. I don’t want to pretend otherwise. I am not ashamed of Jacob’s differences; I only wish that Jacob felt the same way. But I think questions like the one that the photographer asked could have a devastating effect on how Jacob perceives himself or how he thinks the world views him, no matter the good intentions behind the question.
It is a race against time to stop Jacob from developing the conviction that his wheelchair is a cage instead of something that frees him. It is hard enough to have to fight ableism within the walls of my own home as I try to help my terminally ill, disabled and autistic son learn self-acceptance, as well as to assist him with cultivating a grateful heart, but it was an unnecessary and heartbreaking hardship to have to combat on picture day too.
All I can say is that picture day will never be the same again.
Getty image by GoRodenkoff.