When the you-know-what hits the fan, does your theology work?
Last summer, my then new-found theology of disability slammed into the reality of my life as a caregiver in spectacular fashion. After a full morning of summer school, I was sitting at work attempting to be productive with the few brain cells I had left, and I get a call. It's Justin. He's hysterical. I literally could not understand him because he was so panicked. I finally figured out that he's at work and he's in the bathroom. That's about all I needed to know. I dropped everything at work and left. I went home to get supplies, and on the way I literally caught every stop light possible.With tears running down my face, I found myself yelling at inanimate objects. I was emotionally done. Not only was I pushing my own stress back, but I was also trying to manage Justin's panic.
I'm tired of having to drop everything. It's not fair. No one else I know has to do this kind of thing on such a regular basis. Why, God, why?!?!
Then, I started playing the blame game. If Justin ate this and not that, this wouldn't happen. If the doctor would only give Justin something to help, this wouldn't happen. If, if, if... My anger welled up at all of these people who have made this hard on me. And then, I remembered something that has come out of my own mouth again and again:
The anger eased, the panic subsided, and the work began...
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Since that encounter, which honestly was nothing new then and is nothing new now, I've faced many instances where what I say about God and disability comes to the test in real life situations. I've heard great "thinkers" think and speak very badly about disability theology to a room of disabled persons and their caregivers. I've seen supposed leaders look down to my husband because of the wheelchair. I've lamented as it seems we'll never get ahead, and I've laughed in order not to cry when people say stupid and ridiculous things in attempts to be "helpful." I have wondered where God is, and I have seen God at work. In all this, even when it feels we are most alone, I do not hesitate to affirm that "God is with us, we are not alone." This is the core of our engagement with God and disability, the basic confession from which all else comes. This is the foundation from which I can proclaim God as "my rock and my fortress, my God in whom I trust."
You know, when I look back at last summer's adventure in the men's restroom, I will never forget what happened as I started the work of cleaning and caring. A man came into the men's restroom, saw me going back and forth from a sink to the stall, and proceeded to go report me to the receptionist. In less than a minute, I hear a loud and very disgruntled voice at the door, "Ma'am, don't you know this is a men's restroom? You're not supposed to be in there." Without the careful thought that usually attends my words, out of my mouth comes in an equally loud and forceful tone, "My husband is in a wheelchair. He needs me. I'll get us out of here as soon as I can." It was a moment of claiming a voice at the table for me. Granted, that's still something I have to work on, but I remember that as one of the first times I did not apologize to someone else for their misunderstanding of my situation. Hear that again--I did not apologize to someone else because they misunderstood my (unusual) situation. If God is with us, if God is in the midst of disability, then I do not have to apologize for the existence or seeming strangeness of my disabled family. Confusion will happen, mistakes will be made on all sides and by all parties, and misunderstanding is inevitable. But, we are all valued human beings made whole and good in God, disabled and nondisabled alike, and sometimes we have to let our theology claim that for us even in the strange mundanity of a men's restroom.
We need to stop addressing disability as an issue of health or un-health. Sometimes our bodies don't do what we want them to. This doesn't change our state before God, and it's time we stopped letting it change our level of respect and inclusion in life and in the church.
The anger eased, the panic subsided, and the work began...
\
Since that encounter, which honestly was nothing new then and is nothing new now, I've faced many instances where what I say about God and disability comes to the test in real life situations. I've heard great "thinkers" think and speak very badly about disability theology to a room of disabled persons and their caregivers. I've seen supposed leaders look down to my husband because of the wheelchair. I've lamented as it seems we'll never get ahead, and I've laughed in order not to cry when people say stupid and ridiculous things in attempts to be "helpful." I have wondered where God is, and I have seen God at work. In all this, even when it feels we are most alone, I do not hesitate to affirm that "God is with us, we are not alone." This is the core of our engagement with God and disability, the basic confession from which all else comes. This is the foundation from which I can proclaim God as "my rock and my fortress, my God in whom I trust."
You know, when I look back at last summer's adventure in the men's restroom, I will never forget what happened as I started the work of cleaning and caring. A man came into the men's restroom, saw me going back and forth from a sink to the stall, and proceeded to go report me to the receptionist. In less than a minute, I hear a loud and very disgruntled voice at the door, "Ma'am, don't you know this is a men's restroom? You're not supposed to be in there." Without the careful thought that usually attends my words, out of my mouth comes in an equally loud and forceful tone, "My husband is in a wheelchair. He needs me. I'll get us out of here as soon as I can." It was a moment of claiming a voice at the table for me. Granted, that's still something I have to work on, but I remember that as one of the first times I did not apologize to someone else for their misunderstanding of my situation. Hear that again--I did not apologize to someone else because they misunderstood my (unusual) situation. If God is with us, if God is in the midst of disability, then I do not have to apologize for the existence or seeming strangeness of my disabled family. Confusion will happen, mistakes will be made on all sides and by all parties, and misunderstanding is inevitable. But, we are all valued human beings made whole and good in God, disabled and nondisabled alike, and sometimes we have to let our theology claim that for us even in the strange mundanity of a men's restroom.
