Summer Institute for Disability and Theology
Debbie Creamer, PhD
July 16, 2012
* work in progress -- do not copy or quote without permission *
Some of you know that my academic interests, for quite some time now, have focused on rethinking and reclaiming disability from a theological perspective – and, rethinking and reclaiming theology from a disability perspective – largely through my proposal of the limits model, which I offer as a companion to models of disability that focus on moral, medical, or social/minority lenses. I have suggested that, even as we push against uncritical moral understandings of disability (that it is a curse or a blessing, that we are victims or saints), even as we declare medical understandings to be dangerously partial (we are more than body-machines with parts that work and don’t work to greater or lesser extents), and even as we advocate for the rights of people who experience discrimination and exclusion because of the way society engages (or fails to engage) our perceived physical/cognitive/affective differences, it is also important to realize that “people with disabilities” are not the only ones who experience “impairment” or limits. In fact, as I have argued, limits are an ordinary and unsurprising aspect of human life – disability is more “normal” than normal, in that normal doesn’t really exist (or, at least, I’ve never met a “normal” person), and at most any of us are temporarily able bodied. I highlight the fact that all of us experience some limits all the time, and perhaps it’s time for us to pay attention to which limits we label as normal (e.g., that we can’t fly) vs. those that we consider to be disruptive (e.g., that I can’t run). These questions are somewhat counterintuitive because we live and breathe these understandings of what is “normal” and what isn’t, but you can get glimpses of the arbitrary nature of our sense of limits when you think about how even our ideas of what is and isn’t a disability change over time, or how we think it’s normal to adapt for the impairment that some of us cannot walk to all the places we want to go (and so we build cars, trains, planes, even space shuttles) but we do not choose to adapt for the impairment that some of us can’t hear the audio in a movie theater.
Even more boldly, as a theologian, I have suggested that not only are limits an unsurprising part of being human, but they are also intrinsic to our humanity, and they are good (or, at least, not evil). Yes, there are some limits that are dangerous or that we ought not accept, and limits affect our lives in significantly different ways. I’m not arguing for a mushy sense of “we’re all disabled,” but rather asking questions about how we live out our values as we live into and out of our limits, and in particular, asking how we interpret limits in light of our understandings of God, and how we think of God in light of our experiences of limits. For example, as I read Genesis 1, where God saw all that was created and called it good – very good, in fact – and I see that every single one of us has limits, I imagine that limits are not contrary to what is sacred and good. Or, I suggest that it’s not blasphemous to consider a God with limits, and that limits might even connect to characteristics of God that I would find valuable, such as perseverance, interdependence, and creativity, things I often see grow out of experiences of limits, which enables me to imagine the goodness of a God with limits. I don’t expect everyone to read the creation story in Genesis the way I do, of course, nor to agree with my sense that God might have limits – but I hope folks who encounter my work will at least pause to think about what it might mean that we all experience limits and whether, for example, that might help disrupt some of the us vs. them categories that we tend to create around disability and non-disability, or might allow space for new questions about what it is we deem to be “normal.” All of us have limits, and we would do well to think theologically and ethically about these limits instead of trying to pretend that they don’t or ought not exist.
Up til now, in my academic work, I’ve largely talked about limits in general, or by glancing at a very wide range of limits. What I’d like to do this morning is share some of the ideas and questions that I have been playing with recently as I focus specifically in on chronic pain. Just as I have argued that limits are not a defect from an ideal-normal human but rather are part of the ordinariness and goodness of creation – and thus that disability isn’t a “problem” but rather part of the beauty that appears in the diversity of humanity – I would like to try on a perspective on pain that doesn’t immediately think of it as a medical problem to be “fixed” but rather that considers pain to be part of the beauty and scope of what it means to be human. Let me say that again – my proposal today is that we try on a perspective where, rather than viewing pain primarily as a negative, we instead claim it appreciatively as part of the fullness of life and the goodness of God’s creation, and even as an element of God’s own nature. As with limits, I don’t want to argue that we should *not* be concerned with fixing or treating pain, but rather what I’m proposing is that “how do we treat it” shouldn’t be our only question or approach. This is a genuine work in progress – what I’m presenting today is still somewhat new and experimental for me – and so I invite your curiosity and reflections as well, and I look forward to continuing this conversation in the workshop later today and throughout the week.
I should also say that I don’t take on this topic lightly, or strictly as an academic experience. I live with chronic pain – I have some degree of pain most of the time, and a lot of pain some of the time. And this pain is chronic, which means both that it is an ongoing part of my life, and also that it is not easily linked to so-called physical causes. It doesn’t show up as a clear defect on an x-ray or MRI, and it doesn’t respond predictably to drugs or other interventions. To me, this is fascinating, even as it is frustrating (and pain-full). I can’t help but reflect theologically on it. But aside from my self-curiosity here, I think chronic pain is theologically interesting for at least two other reasons:
First, chronic pain is an area of “disability” that hasn’t received a lot of attention, at least within the academic study of disability and religion. As disability theology has expanded from its initial focus on mobility differences, to include a wider range of human experiences such as sensory difference, cognitive difference, and so on, I think our theological work – as well as our work as humans – has become more complex and messy, in the best way. I hope that attention to chronic pain might offer a similar place of growth.
Second, chronic pain is an area of “disability” that offers some really valuable challenges to our existing models and understandings of disability. Pain is messy, it doesn’t connect neatly to advocacy work, doesn’t connect neatly to social/minority understandings of disability, and even medical-scientific understandings of pain keep shifting. As Sharon Betcher notes, attention to pain move us beyond romantic or tidy notions of the body into the chaos and anarchy of flesh, vulnerable and leaky and messy, like “a teacup crackled with ten thousand veins.” And, as a theologian, I think pain raises a lot of interesting questions about God and God’s relationship to the rest of creation, in addition to what it raises about our relationships with ourselves and each other. But we don’t ask these questions, when we don’t claim our own interpretation of something, we leave it for other people to interpret for us. So, as someone who lives with chronic pain, I’d like to talk for a minute about what pain looks like from various points of interpretation, and suggest why these are inadequate, and then I’ll spend just a minute suggesting some alternative points of access, which I hope we’ll continue to explore in this afternoon’s conversations.
I usually don’t tell people about my pain – not in general (just through this talk this morning, I’ve probably tripled the number of non-medical people in the world who know I live with chronic pain), and not even in detail to the trusted folks who know I live with pain. I don’t often tell them “this is a bad day” or “this is a good day” or “I hit an 8 on the pain scale today” – good friends know anyhow, I suppose, because I limp or am grumpy or spacy, or because they notice that I’ve made an extra effort to not limp or act grumpy or spacy – but I don’t say it. Why not? I think in part this is because I grew tired of people telling me that they were sorry for me, or that they found me to be brave or inspirational, or that God must know I can handle it because God doesn’t give us more than we can bear (at which point, I often hold back the desire to cuss vividly). Or, while I don’t hear these words quite so concretely, I also notice folks thinking that God gives us pain to teach us a lesson, to toughen us up, or that pain is part of the Fall (women’s curse with childbirth and all), or just the brokenness and partiality of human life, which will all be fixed (with tears wiped away) in the life to come. These are moral understandings – and while I don’t want to make the argument here that any of these are wrong in and of themselves, my sense is that people often offer these uncritically and in ways that are detached from the rest of their belief system. Folks who don’t believe in a God who chooses winning lottery numbers still seem to think that there’s a God in the sky who picked me for chronic pain. Folks who emphasize the complexity and interdependence of creation still see my pain as something uncomfortable and wrong that needs immediate fixing (or, at least, for me to pretend that it’s gone away). These are moral understanding of pain, and they connect with other moral understandings of disability, where if we don’t reflect on them, we carry them around without knowing them. And we internalize them, too. So partly I don’t talk about pain around other people because I feel shame for my pain – and I don’t think that shame is an unusual response to pain, which also comes from our moral understandings (or misunderstandings).
I mentioned that the “chronic” in chronic pain signifies two things for me – one is that it is not an acute pain that appears and then eases predictably but rather is part of “ordinary” ongoing life for me, and also that it is somewhat distinct from what shows up during medical exams. And so I begin to wonder if it’s all in my head – and that something that’s “in my head” must be less right, less real than what my doctor can see, and so the doctor becomes the expert of my body. It strikes me as odd that we’re taught to trust the doctor more than ourselves in the first place, but that’s for another time. But even acute pain is something that makes little sense within a strictly medical lens. At one level, it makes sense to think of pain as a signal for a problem that needs to get fixed, which could rest it neatly within a medical model that sees bodies as machines that occasionally break down and need repair. Pain is sometimes something like the car dashboard light that says “service engine soon.” But it’s not neat and tidy like a computerized diagnostic program. As Elaine Scarry (in The Body in Pain) and others have argued, pain is inexpressible, something we cannot actually articulate to each other. It “shatters language,” she says. You have almost no way to know whether I am in pain right now or I’m making all this up. Perhaps you have seen pain scales, with the numbers 1-10, where a patient is asked to rate how much pain she is in on a given day. The hope is that each of us can be at least somewhat internally consistent – that a 5 for me one day is like a 5 another day – but there’s no way of knowing whether a 5 for you is at all like a 5 for me, and in fact it’s most likely quite different. Pain clinics these days often focus as much on meditation and sleep habits as they do on drugs or medical interventions. There’s a lot of wonderful work being done on this, looking at pain management as the intersections of science and art, or medicine and philosophy, but my main point here is that pain isn’t really a simple medical issue, and that we shouldn’t abandon our sense-making about pain a medical lens alone.
I could talk for a minute about how the social model of disability engages pain, except it simply doesn’t. This lens often suggests that “disability” exists in architecture and attitudes, not in the human body. There are ways in which social framings do affect my pain-full body – staircases and uncomfortable chairs can make my pain go up – but even the most perfect changes to attitudes and architecture and social structures will never take away my pain. If anything, the social model attempts to erase pain by ignoring it or treating it as irrelevant. This, too, is not a sufficient model for understanding the human experience of pain.
I suppose it’s not surprising that I think that something like the limits model offers some possibilities here, particularly as we think theologically. Pain is interesting to me in part because it’s a common human experience. We all experience pain, in different ways during our lives, and we likely will experience more pain the longer we live –whether that’s physical pain that comes from arthritis or broken hips or other experiences that we think of as being somewhat “normal” with aging, or whether it’s the kind of emotional pain that comes from a longer life, with more space for grief and loss and regret – and just as an aside there, I’m not sure I want to separate physical from emotional pain, particularly as we know that “emotional” pain has physical symptoms, and physical pain affects us emotionally. But my point here is that, just as all people experience limits, we also all experience pain, and it seems awkward and inconsistent that we tend to define pain in contrast to life instead of understanding and embracing life and pain as intertwined.
If we think about it, we don’t want a life without pain. Pain tells us that something is wrong – take your hand off of the hot stove, or stop riding your bike when you have a torn hamstring. People who live without pain live in great danger. Pain also tells us that something matters – we feel genuine heartache at moments of great loss, our stomachs ache when we are overwhelmed with stress. As painful as all those things are, I would not want to be without them. Sometimes folks talk about “good” pain – the pain that comes with happily tired muscles, or the sharpness and release that comes with a good massage. Pain is linked to pleasure, to sex and childbirth, to struggle and growth. It motivates us to speak out against injustice, and becomes a way we embody our resistance to injustice. I wonder sometimes if we’d have a more just world if those of us with privilege actually could feel the pain of the lives we live and the ripples we cause, something more healthy than our tendency to detach (or numb ourselves) from things like poverty, racism, and injustice.
Finally, I think I want a God who feels pain – not just in a romanticized or symbolic way, but deep in God’s body. A God who feels the pain, not just observes or imagines it. And I suppose that God would feel pain in a way that is chronic, with no end in sight and with a scale that goes beyond measurable circumstances. Just like Eiesland’s initial proposal of a disabled God, the idea of a God in pain is not foreign to us -- those of us in the Christian tradition remember that Jesus wept, and we can only imagine the physical and emotional pain of crucifixion. Most traditions carry stories that link pain with divinity, and all of our prophets and theologians have known pain in their bodies, and known the world through their pain. If we can only encounter the world through our bodies, and if our bodies regularly feel pain, then even the way we know the world is affected by and grounded in pain. I even wonder if the incomprehensibility and unfathomability of God is like the incomprehensibility and language-shattering nature of pain. If I cannot articulate my pain to you, no wonder God, who must feel even greater pain than I do, is One who cannot be fully articulated or known to me.
Pain is unsurprising, it is intrinsic to what it is to be human, and it is good (or, at least, not evil). I want to be a body who feels pain. I embrace my chronic pain as part of who I am – yes, I like drugs and other ways of easing it, but it offers me a lens to the world that is mine. I don’t know the world except through pain. And I value the world I see this way. It makes me pay closer attention to the world around, even as it also gives me moments where all I can experience is myself. I might even go a step further than I have with limits to suggest that pain is, in some ways at least, sacred. Here I don’t mean quite what Ariel Glucklich describes, in his book called Sacred Pain, where he describes how and why folks sometimes engage in self-harming as a way to reach the divine (fasting in the desert, pilgrims taking on long journeys). I’m not suggesting that pain leads us to the sacred. No, I think I’m suggesting that pain itself is sacred, particularly in the ways that it unmake us (a la Elaine Scarry) and transgresses ordinary space and time. And I don’t mean a romanticized sacred, either, or one that is pure and perfect and up on an altar. But the messy, down in the dirt, alive kind of sacred, thoroughly grounded in the complexity of everyday real life and yet also breaking into our lives in ways that thoroughly rupture them – completely unmaking us whether we like it or not – but without such rupture we would perhaps never really feel or live or grow. And perhaps we should be embracing these moments of rupture, even rejoicing in them, even as we also struggle with the pain in ways that refuse to romanticize or sterilize or passively accept it. Yes, I think pain is sometimes the “check engine” light, but as a theologian, my hope here is that it also is something more.
For some of you, chronic pain might make more sense as a sign of the brokenness of the world, or the fallenness or frailty of human life. There are days I’ll agree with you. I’m not arguing against such interpretations here, but rather want to highlight two main points. First, it wasn’t long ago that theology considered all experiences of disability as brokenness and as contrary to God’s plan. Disability was a defect. We think more complexly now, or at least ask more questions. Just as we have come to think of the full humanity and goodness of people who are Deaf or who have Down’s Syndrome, I’d also ask us to reconsider our assumptions and prejudices about the “wrong-ness” of pain. Second, given that all of us experience pain some of the time, and some of us experience pain all of the time, I’d ask that we not only look at how to fix it, but that we also consider it as a source for knowledge, a way of knowing the world, and in that way it is perhaps even part of the beauty of creation, the design of life, the depth of the human experience. Rather than trying to numb ourselves or erase our pain, I invite us to live fully into our pain, to ground ourselves in our pain, to think about the ways that pain is embedded and entangled in the goodness of life, to welcome the ruptures, to dive deep into pain and find out what we can learn within it. At least, that’s what I’m playing with today. I look forward to your thoughts.