When Livi was born, the thought that most people desire something that is not this ran through my mind over and over. I did not understand how medically, things could be this way. At our NICU discharge, the pediatrician casually said, “Livi is beautiful. You must be thrilled.” After weeks in the NICU and discovering that our baby has many congenital differences, this is our send-off. Words said with such ease.
I wish I could go back and immediately begin the hard work to see that she is endlessly beautiful. I wish I had leaned into the things I felt were wrong and begun the work of unlearning right away. I wish this was as easy for me as the pediatrician’s words, but in the moment, all I see is hard. I see the things society has told me are wrong.
Livi comes home with a medical handbook and nighttime nursing support. I bounce between superficial acceptance and hope that she will grow into definitions of typical. A few months later, I get the results of an MRI brain scan for myself. I am hard of hearing, trying to determine if it’s more than genetics. The MRI is pristine. But, when I read the results, it notes a speck of something. Static, I am told. I must have been moving. I hold onto this little piece of static, thinking that if I have a brain difference and I am fine, then Livi will be too. I decide for my daughter that my life is greater than. I hold hands with ableism.
I again begin to realize how deeply rooted otherness is.
Ableism is a set of beliefs that I have worked hard to understand and dismantle—I would love to say since Livi was born, but in those early days of grief, all I wanted was for those around me to know that I did nothing wrong to cause her differences. That she was fine. Egocentric, I suppose. The “me” focus we have all become so inclined to.
As I observe Livi explore and grow, I notice how much she adores herself and all the things she can do. When she was born, doctors began outlining her differences and making predictions within seconds. In those early days, I heard that she was different because of all the things that would make it hard for her to fit into the world. I continue to hear this when my friends worry about the development and abilities of their own children. And every time, it crushes me that what I have is not what they want.
I believe this is the core of ableism. The space that holds neuro-typical and able-bodied ideals at the heart of all that is strong and worthy. It lives in pregnancy as we measure our developing babies’ growth against medical standards and growth charts. It lives in motherhood as we chart milestones and make comparisons. It lives in parenthood ideals as we worry that we are the root of what is different.
I find myself living in these comparisons again in my pregnancy after Livi. And in doing so, I again begin to realize how deeply rooted otherness is. I wonder how much of this is felt by children as we push them towards ideals that are often unattainable.
I will never be Livi’s voice. She has her own and she shares it in many ways beyond spoken words. I can, though, help send her voice loud and clear. To start with, I can share my own disability.
Her disabilities are not anyone’s inspiration.
I have been hard of hearing since my early twenties. I have been told hundreds of times to get hearing aids as if I am missing out on so much the world has to offer. As if full hearing grants you access to membership of society. I began wearing them last year at age 36. I do want to hear my children laugh and sing. I do want to have full access to all the teachings of my Kindergarten students.
But I mostly got hearing aids because I feel the frustration of others as they try to communicate with me. My disability is their angst. This little bit of extra care needed creates tension and inconvenience.
I brush this off often. I wonder if Livi can take care of her feelings in the same way I do. I am noticing others look at her with wonders, and I know where these wonders will go if together, we cannot dismantle ableism. Again, I feel guilt. It will take more courage to do this—from us all—than I had in those early days of parenting a child with disabilities.
When Livi went into her Kindergarten transition meeting, there were many questions about what we were doing to prepare her to be successful. I wondered, what is the school doing—the teachers, the other children, their families?
Gosh, we are making her work so hard to be herself. This otherness that families and children with disabilities take on is what crushes the soul—not the disability itself. We can feel for Livi’s health struggles and the things that cause her physical discomfort. This is common care needed by us all. But, when I see her look in the mirror, when I see her play, when I see the ways she can communicate beyond words and when I see the ways she moves, I return to the static found on my MRI scan, the early NICU days and the pediatrician’s comment.
Livi is beautiful because she is Livi. The same way your children are beautiful. Not better than or less than any other child. Her disabilities are not anyone’s inspiration. And while her job is not to teach others, she has unintendedly moved me to accept my own disability.
In doing so, I have built the courage to ask that others make space for me as much as I make space for them. I am asking you to look at Livi. To see her. To make space for her. To teach your children that she is great and able, too. That they are great and able. That there are hundreds of ways to walk, talk and live. That there are hundreds of ways to be.