How Religion Impacted My Growing Up With a Disability

New Year’s Eve 1999 was the first time my parents allowed my siblings and me to stay up past midnight. This made for a killer essay for English class, full of childhood excitement, sparkling cider and Auld Lang Syne. This was also the first year I learned about New Year’s resolutions. My mom had gotten me a goals chart. That night, with her help, I proudly wrote that by year’s end, I would walk unassisted.

We clearly had different definitions of “unassisted,” but I believed I’d walk by myself. I went downstairs and told my father, who was holding a video camera. Did I mention I was trying to walk with crutches? I realize now that this was my audition for playing Tiny Tim. And as a child, believing that one day God would make me walk, I’d say I nailed it.

I can still remember my favorite verses from the Book of Isaiah, which evoked images of being able to walk without fainting and run with the strength of eagles. Forgive the pun — but Jesus Christ! If that isn’t inspiration porn, what is?

As a child, I was prayed over at my first church service, in the hopes of a miracle cure — a Kool-Aid I unfortunately drank. I thought I would one day hear a basso profundo voice, booming from the sky: “Gregory, thou shalt walk!” Funnily enough, I never thought to pray more or do anything special to comply with our bargain. I expected to be cured because that’s what was promised. Thus began my tempestuous relationship with God, which I now realize reflects my struggle to relate to my disability.

But one day, I abruptly realized God would never cure me. Something inside me utterly broke. In a scene in Disney’s original Aladdin movie, the monkey, Abu, touches something in the Cave of Wonders that isn’t the magic lamp, causing the cave to melt into itself. That’s exactly how I felt, and it took until I was in high school to get past it. In the meantime, I wrote plenty of depressing poetry and English essays about how sad I was that I would never walk. Even more stomach-turning was that I was encouraged to and felt expected to write about my medical history. It felt like the trauma of my childhood hospital experiences was the most compelling thing about me.

That’s the problem with miracles. They make us complacent, putting the onus on God to better our lives. When God doesn’t, we’re let down, and the ensuing, complex emotions can take years to resolve. Don’t worry, though — when I finally became comfortable with the fact that I would never walk, I realized I’m “inspiring!”

Let’s address what church is: a gathering where someone with a degree in how to read the Bible discusses its meanings in our lives. For me it was theater, because my parents would get me out of my wheelchair and walk me up to receive communion. But, with the spotlight on me, I became everyone’s inspiration.

I did not necessarily believe that I was inspiring, but I grew to believe that there was something about my disability that inspired others. I internalized that. And when you think it’s your job, it becomes a crushing responsibility, leaving little room for things like mistakes, complaining, or acknowledging what it’s really like to live with a disability. I had to be inspiring because other people said I was. And I couldn’t let them down. This phenomenon reached its apex during one Holy Week.

That year, the priest remarked that the way someone received communion showed the grace of God in real time. I thanked God that the church was dark as I turned purple with embarrassment. Sure enough, that night it took forever to get home because people even came up to the car to tell me I was such an “inspiring example of God’s grace.”

In the long term, inspiration porn can lead to depression, because you start to believe that you don’t have a right to experience emotions like other people. Or that the difficulties of life as a disabled person are there for you to overcome in order to inspire others with the example of your strength. This lasted until my 33rd birthday, when I told someone that I thought the world needs more disabled theologians. The next day, I listened to Judy Heumann’s podcast. She was speaking to disabled theologian Amy Kenny, who wrote My Body Is Not a Prayer Request. I got the book.

Kenny’s reading of the Bible is inclusive. Suddenly, I saw myself reflected in these canonical stories which many of us know regardless of our beliefs. God became a Creator who believes in biodiversity, and disability became a crucial part of his creation. It was neither a curse nor something to overcome for the benefit of others. Kenny discusses how Jacob’s hip was permanently dislocated after he wrestled with the angel. Therefore, disability became a permanent marker of his contact with the divine. The prophet Ezekiel had a vision of God in a throne with wheels. Kenny argues that this could be seen as God using a wheelchair. I would add that in Ezekiel’s vision the wheels are made from angels and other heavenly creatures. The imagery essentially demonstrates a theological model for caregiving: Even God is dependent on others to move.

Culturally, religion is something almost everyone can relate to in some way. The Bible teaches that we are all created in God’s image. Therefore, seeing God as disabled is just as powerful as disability representation in pop culture. For me, thinking of a disabled God helps to confront ableism. We all know that disability can be an incredibly isolating experience. Viewing disability as an attribute of the divine gives disabled people their own divinity. In the final chapter of her book, Kenny describes heaven as a totally accessible public space or a night out with a group of friends where everyone’s needs are understood. Seeing disability as part of God’s plan is a first step towards accomplishing that reality.