![]() My joints were visibly inflamed and radiated heat, a fire that seared my body at every hinge where bone meets bone.Īt first, my rheumatologist spoke about the possibility of remission, but we don’t talk about that anymore. On my worst night, my partner carried me to the bathroom because I could no longer walk. In the weeks preceding my diagnosis, I could hardly hold a spoon or open a jar of peanut butter. Seventeen years later, I was diagnosed with systemic lupus erythematosus- an inflammatory autoimmune disease that can attack every organ in the body, including the skin and joints. I will spend the rest of my life doing that, the ebb of hearing in my left ear changing constantly depending on the day, the weather, or whether I’ve had too much sugar or salt. I held my fingers up to my ear and snapped. I heard nothing at first, just felt pain like a needle, felt the rush of blood in my head and the muddled vibration of the creek that ran behind the condemned trailer we called our home. I was eight years old My older stepbrother shot a bottle rocket at me, the zip and pop of it erupting at my left ear. ![]() It was a hot July day in Arkansas when it happened. It feels like there is cotton in my ear, pressure behind my eye. My jaw aches from constant clenching, left side of my face perpetually swollen. When we meet Leeza, her greatest wish isn’t that she weren’t disabled it’s that the trauma she experienced had never happened at all. One moment, she was walking with her father and the next, she couldn’t feel her legs. She was robbed of her childhood as she knew it when Joe Collie irresponsibly misfired a gun, paralyzing her from the waist down. Leeza feels robbed, and those feelings are justified. It’s more complex than that, and I think my own experience of disability helps explain why. These stories predictably lack the nuance to include the disabled person’s experience of themselves and of the world. The conflict in these stories is often the disability itself, and the goal of the characters to find a cure, or to learn life lessons from the pure, lovable, and “inspiring” disabled character. So many narratives center the feelings of the caregivers of the disabled person, their angst and anxiety around the burden of caregiving. With a track record that includes What’s Eating Gilbert Grape and Forrest Gump, disability as written by non-disabled people tends to get it wrong in over-the-top, egregious ways. I don’t blame anyone for being skeptical. Never mind the historical context of this scene’s inclusion Miraculous healing of disabled bodies is deeply rooted in theology and zealous evangelicalism, and writer/director Mike Flanagan only revels in this moment so that he can turn it on its head in the series’ third act. Seeing Leeza rise from her chair is an affront, but one that lacks the context of her complete character arc. “We don’t need to be fixed,” is a rallying cry in the disability community. They narrow in on the moment Father Paul withholds the Eucharist and forces Leeza to rise from her wheelchair, making a miraculous example of her before an awestruck congregation. I’ve seen a few premature reactions to her character from people in the disability community, whose only source appears to be the intentionally misleading trailer, or the equally misleading first few episodes of the 7-part limited series. I think Mike Flanagan got my experience of disability right with the creation and evolution of Leeza Scarborough, a teenaged wheelchair user. Grant Me Serenity: In Defense of Leeza Scarborough by Mae Murrayīecause I exist in disability circles and am privy to the conversations that take place there, I need to get something off my chest:
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