Atticus had his latest surgery this week, an operation on his knees that one of our friends and CP mentors calls “a right of passage for a CP kid.” We are home from a week in the hospital now, licking our wounds and recovering. This is an experience we are way too familiar with, between my health and Atti’s. We keep losing track of how many surgeries we’ve each had, so none of my recent social media posts even have consistent numbers. When Atti is grown I hope we will write a book together about these experiences, but until then I try to be very thoughtful about how much I share. He always signs off on pictures and videos I share and which stories I tell, and I try and think about which ones he might be OK with at one stage of his life, and not OK with at another. An 8 year old might think a pic of his baby butt on the internet is funny, a teenager, not so much.
For now I will say that these surgeries are harrowing. Harrowing in a way I struggle to talk about without getting too close to disableist tropes about how *hard* it is to be a “special needs parent.” The truth is that there is nothing “special” about needing medical care. And it is HARROWING to have to encounter America’s current healthcare system, even if you are on the luckiest end of it like we are.
There were a couple of moments in there where I was witnessing something truly awful and the sarcastic bitch in my brain said, “Oh great, that sight’s gonna feature heavily in some future panic attacks. Filing that image away in the PTSD drawer!” I have spent so much freaking time trying to clean out that drawer and it just keeps filling up.
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I don’t believe that God is the one who gives us hard things in our life. The God I have a relationship with is not putting me through an obstacle training course, God is with me and around me and inside my mind and heart. Not held apart in some holy unreachable place, but right here, in the trenches of this life with me. God is not asking me to dance while God pulls my strings all in the hopes that I grow from it while so many people in similar situations canker over or just suffer until they die. God doesn’t love me more than them. If we believe God is making the choice on who experiences hardship, there is no reason or explanation that satisfies why some suffer so much in this world and others don’t, that doesn’t render God into being a bigot or a bully.
The Mormonism I come from has in its theology that God is NOT omniscient. I was taught that was unique among Christian churches, but since leaving the faith of my childhood I’ve learned they really can’t be trusted to report what other faiths believe. Maybe it’s not unique. But I was taught that God can’t just do whatever God wants. God has rules to follow or else God “ceases to be God.” To Mormons, obedience is such a high priority that even God has to follow it. I was taught that “Mercy cannot rob justice.” And so God does not intervene to prevent suffering because the guilty have to be judged appropriately. If God stopped wicked acts, no wicked people could be appropriately judged. So innocents have to suffer and that will be added to their own judgments and the celestial math will come out in the end to determine your eternal fate. I think about this and envision God in a ratty gray suit, with a shiny bald head and small glasses, sitting behind protective glass, an officious government worker at City Hall, shrugging God’s shoulders as God explains there is nothing to be done, “it’s just the policy” and shuffling papers around while God avoided your gaze.
No. That just does not match up with the relationship I have. In prayer, in meditation, in moments of quiet solitude and dark nights of the soul. Every part of me rejects this notion of a bureaucratic God who checks your paperwork before you ascend to a hierarchical heaven. I reject it. I don’t believe it anymore and it was bad for my soul when I did.
I have rejected the Mormon God, but I still love Jesus. Jesus says that “rain falls on the just and unjust alike.” Jesus says we are to love everyone because we are all children of God, and the hardships we experience are just part of living on this planet, just like experiencing rain and sunshine. This makes sense to me. It reminds me of the social model of disability.
The social model of disability is an example of critical theory. It argues that what is actually DISABLING to a person isn’t whatever behavior their body is or is not capable of performing. What is actually disabling is the society that particular body has to exist in. In Atti’s case, using a wheelchair is nothing but a joy for him. He LOVES his wheelchair. He doesn’t sit and pine away that his body isn’t doing what my body does, he just does what he is capable of. Like every other human. Just like I don’t spend a lot of time cursing my inability to play volleyball or hit a basket. It’s fine. It’s just how my body came.
What ACTUALLY is disabling is the fact that anytime we want to go in public we have to gamble on finding spaces that are accessible to us. It’s not being able to take a walk in our own neighborhood without planning a route that has curbcuts. It’s not being able to go in certain stores, restaurants, public spaces, government buildings, schools because they aren’t built for wheels. It’s not being able to speak Autistic in public without getting stares and side-eyes. Cerebral Palsy and Autism doesn’t cause any of that pain. The world he has to navigate with them does. That’s the social model of disability.
I still believe that God can’t just do anything God wants. But now it’s less because God’s a middle manager in some eternal bureaucracy, and more because God is a parent. And just like me, God can’t undo the things about this life that make God’s children suffer. God can only walk with us and around us and inside us and bring us comfort and love and solidarity and inspiration as we walk through this life that people have created. People built the institutions and crafted the laws. People and their biases are the ones insuring that some people go hungry while other people hoard resources. People built the medical system that is such a nightmare to navigate. God didn’t bring any of that to my door. The society I live in did. The social model of adversity.
I always say: People are the WORST. But humans, I love.
The difference to me is vulnerability. People are still wearing their shiny image-crafted personas, pretending they are in control of things and know what to do. Humans embrace their woundedness and aren’t trying to be anything other than what we are. Humans know we don’t have the answers and are open to finding them. We are aware of our mistakes and our limitations and have the humility to repair and restore. People just cover up.
Since embracing my humanness I don’t have to plaster a “high vibes only” smile on my life to prove I’m succeeding. Now I know I’m succeeding every time I have the smallest of victories against this rigged system and corrupt world. Acknowledging that I am fighting forces outside of my control – capitalism, bigotry, government corruption, coercive religion, pervasive abuse culture, suffering of every human flavor – means that none of it is personal. God is not choosing this for me. It is something to fight against in order to love all God’s children the way that God loves them.
When I believed that God was determining my suffering, it made me crave death like sugar. I felt tortured and cosmically rejected, coated in shame that God had determined this was the path I had earned. Now I understand that my suffering was actually the direct result of bad laws governing reproductive health and the toxic nightmare stew that is the American healthcare system. God didn’t give me endometriosis because I was unfit to mother God’s spirits, it’s just the rain falling on the just and unjust. It’s just part of having a human body. 1 in 10 women have it. It’s a pretty standard feature of human biodiversity. It’s not God torturing me, it’s This World.
As we can see clearly now, the forces in power don’t want us recognizing that the system we’ve built is the source of our problems. Because that means it can be torn down and rebuilt. That’s why the monument removals are so powerful. We built them. And we can unbuild them, and build new ones.
