Too much. Too loud. Too vocal. Drawing attention. Advocating loudly. Never satisfied.
In the space of a few weeks, these words became loud in my mind. Back to school meant lots of conversations, text, and e-mails. Needs. Disagreeing with people, and working really hard to come across diplomatically. My mind bent over gasping for air while trying not to throw up. Not because it was bad. Or, received poorly. But, because advocating is hard. And, scary. Necessary. While invoking fears that if things are pushed too hard, too loudly, or we just take up too much space, my children could suffer the repercussions. Part of me wants to apologize for speaking up at all. Making waves. I can feel it. It’s too much space out of a whole lot of kids with needs. We’re not staying in our area.
A trip to the park buzzing over the excitement of a new swing. One I can roll a wheelchair up on, and watch my daughter lean back and smile in the breeze. I pull up, and immediately feel all the blood rush to my face. They’ve built a swing. A whole separate area for kids with disabilities. I can’t believe it. How did this happen? So I speak up. I arrange meetings and have hard conversations. I listen, and try to understand. I tell them what I want, knowing the cost is astronomical in a Midwestern city that has lost its factories and is struggling to survive. And, I know, I’m taking up too much space in the financial agenda of a city.
We’re out. My daughter is excited. She makes her noises. Grunty and screechy. Over and over. It’s loud. People move away or stare. They don’t know how to respond to it. She’s just communicating. We’re used to it. But, all of a sudden, I know. Too much space. We are occupying more than our share of the noise level.
Sunday morning. Front row during worship because that’s where my daughter wants to be. She can see all the instruments. The singers. There’s room to dance. And, a few times, she makes her way on stage and just sits there, watching everyone, dancing, and sometimes even singing. I breathe deep and purposeful to slow my heart, thankful I can’t see anyone behind me. She darts quickly to make an attempt at grabbing the guitar, and I sprint on stage and grab her. This sort of thing repeats a few times, amidst her other antics of trying to get me to hang her upside down, do flips, and use me as a jungle gym. I can feel it. Sweat is starting to pour out of me. We’re taking up more than our share of space. Drawing attention away from the things people want to be focusing on.
The tears are no longer staying just behind the surface. They spill out onto my cheeks. I’m reminded how long it took for people like her to be allowed any space in society at all. Their space used to be one that hid them away. Gave them less area than was theirs. Took a family, an education, self worth, outdoors, human interaction, dignity, and at times, their lives.
I drop her off at Sunday school, and slink into the back of the church. The weight of the past week of advocating, and feeling too much settles in. I’m self conscious from the worship time, and uncertain whether bringing her in for it, no matter how much she begs, is truly the right thing to do. Our pastor stands up, talks a little about the set up of Sunday school, who goes where, when. And, out loud, in front of everyone, welcomes my daughter by name to be part of worship as she sees fit.
It’s okay for her to take up more space now. To grab back what was denied to so many before her. To loudly declare that she is alive, and has worth. This is her time. Her place. And, we will be here, taking up more than our share of space.
About the Author:
Andrea Mae is a mom, advocate, writer, and special education aid. She spends time caring for her three children: juggling therapies and specialists, reading, hiking, kayaking, hammocking, eating Reese’s, and being followed around by her dog-Daisy.. She is active in her neighborhood and community, advocating for the rights and needs of people with disabilities, and speaking on the topics of disability and theology. She is currently obtaining her degree in special education.
