It was meant to be a very special day at my daughter’s school. And, for the most part, it was. Her school recently had a day where the students were encouraged to invite friends and family members to watch a short concert and enjoy a reception afterwards. To my knowledge, I’m the only parent/caregiver in a power chair. I’ve always been impressed with the school’s accessibility. The floorplans are laid out where everything flows and if there’s a dip in levels, ramps are in place. There is also an elevator connecting the two floors. Until the day of the concert, I’d assumed the school was completely wheelchair accessible.
I’m on a medication that acts as an extremely heavy diuretic in order to flush my body of its spinal fluid (my body no longer absorbs its spinal fluid so the danger is its ability to build up in/around the brain and spinal column). During the first song the children sang, I started feeling as though I needed to go to the bathroom. But didn’t want to make a scene leaving as I was sitting in front of the bleachers and would also have to get my Service Dog up and out with me. So, I sat there thinking I’d just make a quick getaway when I could. But each song led into another until I was hurting, I had to pee so bad! Finally, the principal dismissed the students and families and we all bled out into the hallway. I quickly went to a bathroom but upon opening the outer door, I realized I couldn’t even get my chair through. So, I backed into the hallway and headed towards another bathroom. This time, my chair got in, but there were no stalls big enough for me to use (not only needing to fit my power chair but also my Service Dog). I left that bathroom and saw some kids in the hallway. I asked them where there was a handicap bathroom and they pointed me in another direction. I got so excited until I realized the stall was long but not wide, meaning I’d drive up right in front of the toilet and need to spin around to use the bathroom – impossible.
I grew increasingly uneasy, not just physically but mentally and emotionally. How hard was it to find an accessible bathroom? Why was this simple need so difficult to fulfill? I knew of one more bathroom I could try so quickly made my way there. And, there it was! A stall big enough for me and my Dog!! I pulled up beside the commode and shut the chair off, relieved to finally be able to use the bathroom! And then I reached for the transfer bar… that wasn’t there. My heart sunk; my face fell. I turned my chair back on and left the bathroom, tears forming in my eyes. In the 15-20 minutes I’d been searching for a place to pee, the other women who’d been lined up at different bathrooms were no longer there, having been able to easily satisfy a basic human function. I felt alone and inadequate, separate and different.
I went to the main office and as I began explaining my dilemma to the secretary, I started sobbing. My pelvic area hurt; my pride hurt; my dignity was aching as well. She didn’t know what to do so she called the school nurse. The nurse came to the front office and tried to calm me down. I was told that she could help me use the bathroom but that was not the solution I was looking for. She told me she did this all the time when she worked in hospitals; I responded that I wasn’t in a hospital; I’m an adult mother who uses the restroom by myself and this was unacceptable to me. But there obviously was no other way for me to relieve myself so I went with the nurse down the hallway, passing students and their guests, towards the bathroom. I felt humiliated. It seemed like it was glaringly apparent to everyone who saw us enter that I’m incapable of using the bathroom unaided. That couldn’t be farther from the truth. It wasn’t that I had limitations in this area; the school did. But I wasn’t going to stop each person I passed to explain the situation; I simply swallowed my pride, my dignity, my capable self and let the nurse come into the bathroom with me.
What ultimately had to happen for me to go the bathroom was the nurse not only helping me stand but her pulling down my pants and underwear while I held onto the top of the stall. She then had to pull my underwear and pants back up for me and help me back into the chair. To say I was mortified is putting it lightly. This should not have happened. There should have been transfer bars in the stall to allow me the dignity to use the bathroom privately just as every other student and adult did that day. My daughter and I are already different enough, and I was heartbroken that students had seen their nurse go into the bathroom with me – I didn’t want my having to pee end with negative consequences for my little girl. Kids can be cruel. Furthermore, the kids see their parents and adult friends in roles of authority, control and an all-around sense of what being a grown-up means. I want them to see me that way, too. Because it’s true – I am in a position of authority. And while we as adults don’t truly have control, it’s a natural assumption of a child to think that we do.
Once I finished using the restroom, I had missed nearly the entire reception. I found my daughter and sat with her for about five minutes while she finished eating. She wanted to know where I had been and why I hadn’t joined her until that moment. I told her I had to use the restroom and she exclaimed how long it had taken me. I didn’t have the heart to tell her the nurse had to help me; she probably would have been confused as to why. She knows I can go to the bathroom by myself.
I plan on meeting with the Dean of students. I intend to discuss this event with him and suggest necessary changes. I want this to be a moment of education for the school. This was not something that happened because I’m disabled. This happened because the school does not have the adequate and acceptable structures in place for someone like me. I may be their first disabled parent but I’m pretty sure I wont be their last. And I don’t want another parent to feel like I felt emotionally, mentally and physically that day. I don’t want them to miss out on an activity with their child because the school is not equipped for them.