Sunday, October 12, 2014
12:41 PM Acquired disabilities, autoimmune encephalitis, Parent-talk, school, stigma, wheelchair 5 comments
By Sandra Joy Stein
The note announcing picture day came home in my son’s school folder.
“Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitis—where the immune system attacks the brain—that we received medical clearance for him to participate in an educational program outside of hospital or home. After considerable work to get all the necessary systems in place, for the first time since his illness he was now attending a barrier-free neighbourhood school, accompanied at all times by a nurse.
I was occasionally thrown by how immediately his entry to school brought many ordinary experiences to our extraordinary lives. He had homework; I received emails from the PTA; I signed permission slips for fieldtrips. And now, it was picture day.
I picked out an outfit, lamenting that on that particular day I did not have the requisite time (or patience) to engage him in the choice. I sent a back-up outfit, should vomit or drool sully my original selection. As the wheelchair lift was raising him onto the bus, I made a request to his nurse. I had recently seen class pictures in which a group of currently able-bodied children stood clustered in the centre of bleachers with the one child who uses a wheelchair positioned to the side of the bleachers, separate from the class.
I find these images to be unnecessarily isolating to children who work tirelessly to participate in a world that has not been designed for them. I suggested that if the whole class were posed in such a way, with my son off to the side, to please ask for an alternative arrangement. She agreed to raise the issue should it come up.
Mid-day I received a text message from the nurse informing me that for the class picture they took my son out of his wheelchair and his teacher supported his head and torso so he could sit with the rest of the children. That made sense to me since they do take him out of the chair to sit with the other children regularly and his head and trunk control have improved enough over time that with a little input from an adult, he can sit in some of the classroom chairs safely. In the class picture, he would be right beside his peers, a full member of the classroom community.
But then came a second text message: “Solo pic was in his wheelchair but they’re gonna photoshop his headrest so you can’t see it.” I felt a lump in my throat. I had asked that he not be isolated from his peers in the class photo, not that his individual shot omit all traces of his illness. Who thought we would not want to see the headrest of the chair that has become the means for our son to move around in the world? I thought to write back immediately saying: “He uses a wheelchair. It’s fine. Keep it in the pic.” But I often find that taking time after my initial visceral reactions leads to better outcomes. So I waited for my husband to come home to discuss it with him.
My son loves having his picture taken. At times, when his body is behaving in ways that seem beyond his control, I hold up my cell phone to snap a selfie of the two of us. Upon seeing our image on my phone he often focuses, calms, and mugs for the camera. It’s a phenomenon I cannot begin to understand, so I don’t try. I have several pictures of the two of us, looking right at the camera, smiling together as if someone just told us to say cheese. When I post these pictures on Facebook, I comment that they are from the “If you didn’t know you wouldn’t know” files because there is not a visible trace of the three years my son has been battling his disease.
I am admittedly more likely to post these pictures to Facebook than the ones where the visual effects of the disease—the deviated gaze, the open, drooling mouth, the protruding tongue, the asymmetrical facial expressions, the blank stares—are visible. I have justified this tendency by looking at the postings of friends’ kids whose childhoods have thus far not included disabling diseases. We all post what we believe to be the most attractive shots of our kids, the ones where they look happy and loving and impish and proud…right?
But the thought of any part of his current state being photoshopped out of a professionally taken picture disturbed me. I told my husband the story and he had the same reaction. Our son used to walk on his own. He does not now. He may or may not walk again someday. In the meantime, there is no need to photoshop any aspect of his current state out of visual existence.
We wouldn’t want the photographers to airbrush in a smile that his facial muscles didn’t authentically produce or paint the missing teeth back into his mouth. In fact, we wouldn’t want them to change a thing about his picture, as it is a snapshot of his incredible life as it is today. There is nothing about the physical imagery of his journey that brings us shame. Quite the opposite, he is a powerful testament to resilience in every image we capture of him with or without the wheelchair, the drool, and the varying facial asymmetries. He is our son and we stand in awe of his beauty.
I texted the nurse that night asking if she happened to get the photographer’s contact information so we could communicate that we do not want any photoshopping of our son’s picture. She informed me that they would be back to the school the following day and she would let them know.
The next day I received a text from her: “Spoke to photographer. He is leaving headrest in.”
I noted how the attention I was able to give to this issue served as yet another indication of just how far we had come. I was not at this moment suctioning the trache he used to have. I wasn’t watching the alarming ICU monitor while a medical team ran in to resuscitate him. I was not making an impossibly hard decision about medications or surgeries. I was asking that the wheelchair headrest captured in my son’s school picture not be photoshopped out, the health equivalent of a first-world problem.
Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.