Teologia y Dolor

(Thanks/Gracias to Rev. Anne Dunlap for translating my talk from the Summer Institute!)

Instituto de Verano para Discapacidad y Teología

Debbie Creamer, PhD

dcreamer@iliff.edu

Julio 16, 2012

(traducido por Rev. Anne Dunlap)

* trabajo en curso -- no se puede copiar o citar sin permiso *

Algun@s de ustedes saben de que mis intereses académicos, ya por mucho tiempo, se han enfocado en re-pensar y reclamar discapacidad desde una perspectiva teológica -- y, re-pensar y reclamar teología desde una perspectiva de discapacidad -- mayormente a través de mi propuesta sobre el modelo de límites, que ofrezco como una compañera a modelos de discapacidad que enfocan en lentes morales, médicos, o sociales/minoritarios .  He sugerido de que, aún mientras empujamos contra entendimientos morales no críticos (que dicen que ser discapacitad@ es una maldición o una bendición, que somos víctimas o sant@s), aún mientras declaramos que los entendimientos médicos son peligrosamente parciales (somos más que cuerpos-máquinas con partes que trabajan y no trabajan a mayor o menor grado), y aún mientras abogamos por los derechos de personas que experimentan discriminación y exclusión por la forma en la cual la sociedad se trata (o falta de tratarse) nuestras diferencias físicas/cognitivas/afectivas, también es importante reconocer que “personas con discapacidades” no son las únicas que experimentan “impedimento” o límites.  De hecho, como he discutido, límites son un aspecto ordinario y no sorprendente de la vida humana -- discapacidad es más “normal” que normal, en que lo normal no existe realmente (o, por lo menos, nunca he conocido una persona “normal”), y a lo más cualquier/a de nosotr@s es capacitada/o de cuerpo temporalmente.  Subrayo el hecho de que tod@s experimentamos algunos límites todo el tiempo, y tal vez es tiempo para poner atención a cuáles límites etiquetamos como normal (por ejemplo, que no podemos volar) versus esos que consideramos disruptivos (por ejemplo, que no puedo correr).  Estas preguntas son un poco contra-intuitivas porque vivimos y respiramos estos entendimientos de lo que es “normal” y que no lo es, pero puedes tener vislumbres de la naturaleza arbitraria de nuestro sentido de límites cuando piensas en como hasta nuestras ideas de lo que es y no es una discapacidad cambia tras el tiempo, o como pensamos que es normal adaptar por el impedimento de que algun@s de nosotr@s no pueden caminar a todos los lugares que queremos (entonces fabricamos carros, trenes, aviones, hasta transbordadores espaciales) pero no escogimos adaptar por el impedimento de que algun@s de nosotr@s no podemos oír el audio en un cine.

Aún más valientemente, como una teóloga, he sugerido de que no solamente los límites son una parte no sorprendente de ser humano, sino también que son intrínsecos a nuestra humanidad, y son buenos (o por lo menos, no malignos).  Sí, hay algunos límites que son peligrosos o que no debemos de aceptar, y límites impactan nuestras vidas en formas significativamente diferentes.  No estoy argumentando por un sentido blando de que “tod@s somos discapacitad@s,” sino cuestionando cómo vivimos nuestros valores mientras vivimos en y fuera de nuestros límites, y en particular, preguntando cómo interpretamos límites a la luz de nuestros entendimientos de Dios, y como pensamos en Dios a la luz de nuestras experiencias de límites.  Por ejemplo, cuando leo Génesis 1, donde Dios vió todo que fue creado y lo llamó bueno -- muy bueno, de hecho -- y veo de que cada persona de nosotr@s tenemos límites, imagino que límites no son contrarios a lo que es sagrado y bueno.  O, sugiero de que no blasfemo considerar un Dios con límites, y que puede ser que límites conectan a características de Dios que para mi tendrían valor, como perseverancia, interdependencia, y creatividad, cosas que miro crecer de experiencias de límites, que me permite imaginar la bondad de un Dios con límites.  No espero que tod@s leen la historia de creación en Génesis como yo, claro, ni de estar de acuerdo con mi sentido de que Dios pueda tener límites -- sin embargo espero que personas que encuentran mi trabajo por lo menos puedan tomar un momento para pensar en lo que pueda significar que tod@s experimentamos límites y si, por ejemplo, eso pueda ayudarnos desbaratar algunas de las categorías de nosotr@s vs. ell@s que tenemos la tendencia de crear alrededor de discapacidad y no-discapacidad, o pueda permitir espacio para nuevas preguntas sobre lo que es que estimamos “normal.”  Todas y todos tenemos límites, y nos sirve pensar teologicamente y éticamente sobre estos límites en vez de tratar de pretender que no existen o no deben de existir.

Hasta ahorita, en mi trabajo académico, mayormente he hablado sobre límites en general, o por mirar un recorrido grande de límites.  Lo que quiero hacer esta mañana es compartir algunas de las ideas y preguntas con las cuales he estado manejando recientemente mientras me enfoco específicamente en dolor crónico.   Igual como he discutido que los límites no son un defecto de un humano ideal-normal sino que son una parte de lo ordinario y la bondad de la creación -- y que entonces la discapacidad no es un “problema” sino una parte de la belleza que aparece en la diversidad de la humanidad -- me gustaría probar una perspectiva de dolor que inmediatamente lo considera como un problema médico para “arreglar” sino una que considera el dolor como parte de la belleza y el alcance de lo que significa ser humano.  Déjame decir eso de nuevo -- mi propuesta hoy es que probemos una perspectiva en la cual, en vez de ver el dolor ante todo como un negativo, lo reclamamos con aprecio como parte de la plenitud de vida y la bondad de la creación de Dios, y hasta como un elemento de la propia naturaleza de Dios.  Igual como con límites, no quiero discutir de que *no* debemos de preocuparnos con arreglar o tratar el dolor, sino lo que estoy proponiendo es que “como lo tratamos” no debe ser nuestra única pregunta o enfoque.  Este realmente es un trabajo en curso -- lo que estoy presentando hoy es todavía algo nuevo y experimental para mi -- y por eso les invito a usar su curiosidad y reflexiones también, y anticipo continuar esta conversación en el taller más tarde hoy y durante la semana.

Debería de decir también que no tomo este tema ligeramente, o estrictamente como una experiencia académica.  Yo vivo con dolor crónico -- tengo algo de dolor la mayoría del tiempo, y mucho dolor algunas veces.  Y este dolor es crónico, lo que quiere decir de que es una parte contínua de mi vida, y que también no se puede enlazarlo fácilmente con tal-llamadas causas físicas.  No aparece como un defecto claro en un rayos-X o MRI, y no responde en una forma predecible a medicinas u otras intervenciones.  Para mi, esto es fascinante, aún cuando es frustrante (y lleno de dolor o sea doloroso).  No puedo evitar reflexionar teológicamente sobre esto.  Pero además de mi auto-curiosidad aquí, yo creo que el dolor crónico es interesante teológicamente para por lo menos dos razones más.

Primero, el dolor crónico es un área de “discapacidad” que no ha recibido mucha atención, por lo menos dentro del estudio académico de discapacidad y religión.  Mientras la teología de discapacidad ha expandido de su enfoque inicial en diferencias de movilidad para incluir diferencia sensorial, diferencia cognitiva, y demás, creo que nuestro trabajo teológico -- tanto como nuestro trabajo como humanos -- se ha hecho más complejo y con más enredos, en la mejor manera.  Espero que la atención a dolor crónico pueda ofrecer un lugar parecido de crecimiento.

Segundo, el dolor crónico es un área de “discapacidad” que ofrece algunos desafíos realmente valiosos a nuestros modelos y entendimientos existentes sobre discapacidad.  El dolor es lleno de problemas, no conecta fácilmente a trabajo de abogacía, no conecta fácilmente a entendimientos sociales/minoridades de discapacidad, y hasta entendimientos médicos-científicos de dolor siguen cambiando.  Como anota Sharon Betcher, la atención a dolor nos mueve más allá de nociones románticas u ordenadas del cuerpo hacia el caos y anarquía de la carne, vulnerable y derramandose y desordenado, como “una tacita quebradita con diez mil venas.”  Y, como una teóloga, yo creo que el dolor levanta muchas preguntas interesantes sobre Dios y la relación de Dios al resto de la creación, además de lo que quiere decir sobre nuestras relaciones con nosotr@s mism@s y l@s un@s con l@s otr@s.  Pero no hacemos estas preguntas, cuando no reclamamos nuestra propia interpretación de algo, lo dejamos para que otra gente lo interpreta para nosotr@s.  Entonces, como alguien que vive con dolor crónico, me gustaría hablar por un momento de sobre como se mira el dolor desde varios puntos de interpretación, y sugerir porque estos no son adecuados, y después voy a tomar solo un momento para sugerir algunos puntos de acceso alternativos, que espero que continuemos explorando en las conversaciones esta tarde.

            Por lo regular, no cuento a la gente sobre mi dolor, no en general (a través de esta presentación esta mañana, probablemente he triplicado el número de personas que no son personal medico que saben que vivo con dolor crónico), y no en detalle ni a la gente más confiada que saben que vivo con dolor.  No les cuento mucho de que “este es un mal día” o “este es un buen día” o “Llegue a 8 en la escala de dolor hoy” – amig@s buen@s ya saben de todos modos, supongo, porque ando con cojera(renquiando)  o estoy gruñona o despistada, o porque se dan cuenta que estoy hacienda el esfuerzo extra para no andar con cojera o estar gruñona o despistada – pero no lo digo.  ¿Porqué no?  Creo que en parte es porque me cansé de la gente diciéndome que me tenían lástima, o que me miraron valiente o como una inspiración, o que Dios tiene que saber que yo lo puedo manejar porque Dios no nos da mas que podemos aguantar (a cual punto, me tengo que retener de decir muchas palabras malas).  O, aunque no oigo estas palabras tan concretamente, me doy cuenta de que la gente piensa que Dios nos da dolor para enseñarnos una lección, para fortalecernos, o que dolor es parte de La caída (pues la maldición de la mujer en parto y todo eso), o es simplemente el quebrantamiento y parcialidad de la vida humana, que se va a arreglar completamente (con las lágrimas limpiadas) en la vida future.  Estos son entendimientos morales – y aunque no quiero discutir aquí que cualquier de estos son incorrectos en si, mi sentido es de que las personas ofrecen estos sin crítica y en formas que no son relacionadas al resto de su sistema de creencias.  La gente que no creen en un Dios que escoge números ganadores de la lotería todavía parece creer que hay un Dios en el cielo que me escogió para dolor crónico.  Gente que enfatiza la complejidad e interdependencia de la creación todavía miran mi dolor como algo incómodo e incorrecto que se necesita arreglar inmediatamente (o por la menos, que yo pretendo que se ha desaparecido).  Estos son entendimientos morales de dolor, y se conectan con otros entendimientos morales de discapacidad, en los cuales si no reflexionamos sobre ellos, los llevamos sin saberlos.  Y los internalizamos, también.  Entonces en parte no hablo de mi dolor alrededor de otra gente porque siento vergüenza por mi dolor – y no creo que vergüenza es una repuesta al dolor fuera de normal, que también viene de nuestros entendimientos (o malentendimientos) morales.

Mencioné que lo “crónico” en el dolor crónico significa dos cosas para mi – uno es que no es un dolor agudo que aparece y después se calma en una forma predecible sino que es parte de la vida “ordinaria” continua para mí, y que también es algo distinto de lo que aparece durante exámenes médicos.  Entonces empiezo a preguntarme de que si todo está en mi cabeza – y que algo que está “en mi cabeza” tiene que ser menos correcto, menos real de lo que puede ver mi doctor/a, y entonces la/el doctor/a se vuelve la/el experta/o sobre mi cuerpo.  Me parece raro que nos enseñan confiar más en la/el doctor/a que en nosotr@s mism@s del primer lugar, pero ese es un tema para otro tiempo.  Pero aún el dolor agudo es algo que tiene poco sentido dentro de un lente estrictamente médico.   A un nivel, tiene sentido pensar en dolor como un señal que hay un problema que hay que arreglar, que puede caber facilmente dentro de un modelo medico que mira cuerpos como máquinas que de vez en cuando se descomponen y necesitan reparación.  El dolor es a veces algo como la luz en el tablero de guia de un carro que dice “atienda al motor pronto.”  Pero no es tan ordenado y arreglado como un programa diagnóstico de computadora.  Como ha discutido Elaine Scarry (en The Body in Pain [El Cuerpo en Dolor]) y otr@s, el dolor es inexpresible, algo que realmente no podemos articular entre nosotr@s.  “Destroza lenguaje,” dice ella.  La verdad es que casi no hay una forma de saber si estoy en dolor en este momento y si estoy inventándolo todo.  Tal vez han visto escalas de dolor, con los numerous 1-10, con las cuales se le preguntan a un/a paciente calificar cuanto dolor tiene en cierto día.  La esperanza es que cada un@ de nosotr@s puede por lo menos tener una consistencia interna – que un 5 para mi un día es como un 5 para mi en otro día – pero no hay una forma de saber si un 5 para ti es algo como un 5 para mi, y de hecho es mas probable que son muy diferentes.  Estos días las clínicas de dolor muchas veces se enfocan tanto en meditación y hábitos de dormir como en medicinas o intervenciones médicas.  Hay mucho estudio maravilloso que se está hacienda sobre esto, mirando el manejo de dolor como las intersecciones de ciencia y arte, o medicina y filosofía, pero mi punto mayor aquí es que el dolor no es realmente un asunto médico simple, y no debemos de abandonar nuestro esfuerzo de hacer sentido sobre dolor a un lente médico solamente.

Pudiera hablar por un momento sobre cómo el modelo social de discapacidad trata dolor, excepto que simplemente no lo trata.  Este lente muchas veces sugiere que la “discapacidad” existe en arquitectura y actitudes, no en el cuerpo humano.  Hay formas en las cuales marcos sociales sí afectan mi cuerpo lleno-de-dolor – gradas y sillas incómodas pueden aumentar mi dolor – pero hasta los cambios más perfectos a actitudes y estructuras arquitecturas y sociales nunca van a hacer desaparecer mi dolor.  Si hace algo, el modelo social intenta borrar dolor a través de ignorarlo o tratarlo como irrelevante.  Esto tampoco es un modelo suficiente para entender la experiencia humana dolor.

Supongo que no es una sorpresa de que pienso que algo como el modelo de límites ofrece algunas posibilidades aquí, en particular como pensamos teológicamente.  El dolor es interesante para mí en parte porque es una experiencia humana común.  Tod@s experimentamos dolor, en diferentes formas durante nuestras vidas, y es probable que vamos a experimentar más dolor el más tiempo que vivimos – no importa si es dolor física que viene de artritis o caderas dislocadas u otras experiencias que pensamos ser algo “normal” con envejecimiento, o si es el tipo de dolor emocional que viene con una vida más larga, con mas espacio para luto y pérdida y remordimiento – y una pequeña digresión aquí, no estoy segura si quiero separar dolor física y emocional, particularmente como sabemos que dolor “emocional” tiene síntomas físicos, y el dolor física nos afecta emocionalmente.  Pero mi punto aquí es que, como toda la gente experimentamos límites, también toda la gente experimentamos dolor, y parece torpe y inconsistente que tendemos a definir dolor en contraste a la vida en vez de entender y abrazar vida y dolor como entrelazados.

Si lo pensamos bien, no queremos una vida sin dolor.  El dolor nos dice que algo no está bien – que se tiene que quitar tu mano de la estufa caliente, o dejar de montar tu bicicleta cuando tienes un tendón de la pantorrilla desgarrado.  La gente que viven sin dolor viven en gran peligro.  El dolor también nos dice que algo importa – sentimos angustia genuina en momentos de grandes pérdidas, nuestros estómagos duelen cuando estamos abrumados con estrés.  Tanto duelen estas cosas, no quisiera estar sin ellas.  A veces la gente habla de dolor “bueno” – el dolor que viene con músculos felizmente cansados, o la intensidad y suelto que viene con un buen masaje.  El dolor está enlazado con placer, con sexo y parto, con lucha y crecimiento.  Nos motiva a hablar contra la injusticia, y se vuelve una forma de encarnar nuestra resistencia a la injusticia.  A veces me pregunto si tendríamos un mundo más justo si nosotr@s con privilegio de verdad pudiéramos sentir el dolor en las vidas que vivimos y las olas que causamos, algo más saludable que nuestra tendencia de desatarnos (o adormecernos) de cosas como pobreza, racismo, e injusticia.

Finalmente, creo que quiero un/a Dios que siente dolor – no solamente en una forma romantizada o simbólica, sino profundamente en el cuerpo de Dios.  Un/a Dios que siente el dolor, no solamente lo observa o lo imagina.  Y supongo que Dios sintiría en una manera que es crónica, sin fin, y con una escala que va más allá de circunstancias que se puede medir.  Tanto como la propuesta inicial de Eiesland de un/a Dios discapacitad@, la idea de un/a Dios con dolor no nos extraña – nosotr@s que estamos en la tradición Cristiana recordamos que Jesús lloró, y solo podemos imaginar el dolor físico y emocional de la crucifixión.  La mayoría de tradiciones tienen historias que enlazan dolor con divinidad, y tod@s nuestr@s profet@s y teólog@s han conocido dolor en sus cuerpos, y han conocido al mundo a través de su dolor.  Si podemos encontrar al mundo solamente a través de nuestros cuerpos, y si nuestros cuerpos regularmente sienten dolor, entonces hasta la forma en la cual conocemos al mundo es afectado por y bien fundado en dolor.  Hasta me pregunto si la incomprensibilidad y inimaginabilidad de Dios es como la incomprensibilidad y naturaleza destroza-lenguaje de dolor.  Si no puedo articular mi dolor a ti, mucho menos  lo puedo hacer a Dios, que tiene que sentir aún más dolor que yo, es Quien no se puede ser completamente articulada o conocida por mí.

El dolor no es  una sorpresa, es intrínseco a lo que es ser humano, y es bueno (o, por lo menos, no es maldad).  Yo quiero ser un cuerpo que siente dolor.  Abrazo mi dolor crónico como parte de quien soy -- sí, me gusta medicinas y otras maneras de calmarlo, pero me ofrece un lente al mundo que es mío.  No conozco al mundo excepto a través de dolor.  Y valoro el mundo que veo/miro de esta manera.  Me hace poner atención más de cerca al mundo a mi alrededor, aún mientras me da momentos cuando todo que puede experimentar es a mi misma.  Pudiera tomar un paso más que he tomado con límites para sugerir que el dolor es, en algunas maneras por lo menos, sagrado.  Aquí no quiero deciexactamentete lo que describe Ariel Glucklich, en su libro llamado Sacred Pain [Dolor Sagrado], en el cual describe como y porque gente a veces participan en auto-lastimarse como una manera de alcanzar lo divino (ayunando en el desierto, peregrin@s tomando viajes largos).  No estoy sugiriendo que dolor nos lleva a lo  sagrado.  No, creo que estoy sugiriendo que dolor en si es sagrado, particularmente en las maneras en que nos deshace (como dice Elaine Scarry) y traspasa espacio y tiempo ordinario.  Y tampoco estoy hablando de un sagrado romantizado, o uno que es puro y perfecto y encima de un altar -- sino el tipo de sagrado desordenado, metido en la tierra, vivo, totalmente fundado en la complejidad de la vida cotidiana real y al mismo tiempo entrando a nuestras vidas en maneras que totalmente las rompe -- deshaciéndonos completamente si nos gusta o no -- pero sin ese tipo de que rotura tal vez nunca realmente sintieramos o vivieramos o crecieramos.  Y tal vez debemos de estar abrazando estos momentos de rotura, hasta regocijando en ellos, aún mientras luchamos con el dolor en maneras que niegan romantizar o esterilizar o aceptarlo pasivamente.  Sí, a veces pienso que dolor es la luz que dice: “atienda al motor,” pero como una teóloga, mi esperanza es que haya algo más.

Para algun@s de ustedes, puede ser que el dolor crónico tiene más sentido como un signo del quebrantamiento del mundo, o lo caído o la fragilidad de la vida humana.  Hay días que estaría de acuerdo contigo.  No estoy discutiendo en contra de tales interpretaciones aquí, sino que quiero subrayar dos puntos principales.  Primero, no fue hace mucho tiempo que la teología consideraba todas experiencias de discapacidad como quebrantamiento y algo contrario del plan de Dios.  La discapacidad era un defecto.  Ahora pensamos en una forma más compleja, o por lo menos hacemos más preguntas.  Tanto como hemos llegado a pensar de la plena humanidad y bondad de personas que son sordas o tienen Sindrome Down’s, me gustaría pedirnos reconsiderar nuestros suposiciónes y prejuicios sobre “lo incorrecto” de dolor.  Segundo, dado que todas y todos experimentamos dolor parte del tiempo, y algunas y algunos experimentamos dolor todo el tiempo, pediría que no solamente miremos como arreglarlo, sino que también lo consideramos como un fuente de conocimiento, una forma de conocer el mundo, y de esta manera tal vez es hasta una parte de la belleza de la creación, el diseño de vida, la profundidad de la experiencia humana.  En vez de tratar de adormecernos o borrar nuestro dolor, nos invito vivir plenamente nuestro dolor, profundizarnos en nuestro dolor, pensar sobre las maneras en las cuales el dolor es grabado y enredado en la bondad de la vida, a dar la bienvenida a las roturas, a sumegirnos profundamente en dolor y averiguar lo que podemos aprender de él.  Por lo menos, es esto con que estoy manejando hoy.  Estoy anticipando sus pensamientos.

Theology and Chronic Pain

Summer Institute for Disability and Theology

Debbie Creamer, PhD

dcreamer@iliff.edu

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.

Pain Management

I've been talking with a couple of friends lately about how chronic pain works as a metaphor (or even case study) for some of the challenges we experience within our institutional lives. One invited me to think about whether the strategies I use for managing physical pain might also apply, or be transferable, to institutional pain.

I started by thinking about whether it might be helpful to address "chronic" and "pain" separately. My strategies for managing physical pain itself are pretty straightforward -- medication, visualization, rest, heat or ice, and, my personal favorites, distraction and denial. Because of the nature of pain, it's also helpful for me to remember that the body is interconnected -- and so sleep, massage, exercise, and a balanced diet can make a significant difference, even if they don't specifically "touch" the site of the pain. And because pain reverberates through and can be amplified by the whole self, pain management strategies also include things like getting fresh air, laughing, talking with friends, making cookies, or any of the other things that we might label "self-care." Beyond this, pain management also looks at prevention, stabilization, and, of course, addressing the root cause when possible.

Some of those strategies might be helpful in thinking about how to manage institutional pain (making cookies and hanging out with friends are two likely candidates, although "addressing the root cause" would be my personal preference). But I think that reflecting on the chronic nature of physical pain also gives us some important insights:

• Some days are going to be worse (or better) than others, and you can't always predict or explain why.

• Because the pain is ongoing, it's easy to forget to take care of it. Even if the pain today is the same as yesterday, it's still important to attend to it today.
  
  
• Yet because the pain is ongoing, the management strategies also need to take this into account. You can't make cookies every day -- well, you can, but it's not that healthy, and at some point it will stop feeling like a special treat.
  
  
• It's helpful (to me, at least) to remember that pain can serve a purpose -- it helps us avoid injury, or recognize when a situation needs to be changed. I wouldn't want a life without pain; this realization often helps me keep pain in perspective.
  
  
• The Serenity Prayer can be helpful here too. Chronic pain means accepting that pain is part of daily life, but that doesn't mean forgetting or letting go of what can be done to lessen the impact or treat the underlying cause.

One last thought. Elaine Scarry argues that pain "unmakes" us -- she describes (physical) pain as something that makes us focus inward, both because pain itself serves as a "blinder" to other experiences, and also because (she says) it cannot be articulated or shared with others. I disagree with her on some of these points, and wonder how the idea of institutional pain might disrupt her particularly individualistic interpretation of pain. Still, her notion of "unmaking" is intriguing to me. In particular, if we think of institutional pain as something that is collectively felt and might be collectively managed, I wonder what it means (or might mean) to experience that which unmakes us, institutionally and communally. If, at our school, we highlight the problematic aspects of systems and structures in ways that often amplify pain, how do we become more intentional about creating spaces for a productive communal "unmaking" that then allows for new life and new possibilities, while simultaneously offering resources for pain management? And, if we already do this in our classrooms, how do we then carry it into the rest of our institutional life?

Quote for the Day

I ran across this quote while doing some other reading:

Love makes your soul crawl out from its hiding place.
~ Zora Neale Hurston

This image really struck me, perhaps as a contrast to the overly strategic tasks that have occupied my brain lately, or perhaps for reasons that have little to do with my brain. The resonance and reverberations are a bit hard to put into words. Most simply, I guess, it feels like it speaks to (and for) the hiding that we all do, while offering another way of being, both for the one who bravely steps out of safe familiarity and into new possibilities, and also for the one(s) who invite (love) the other (or oneself) out into life. I also appreciate that it "crawls" out -- slowly, exhaustedly, not even with baby steps, yet also perhaps with the strength of a survivor. I really like this image, and hope I can carry it with my as I trudge strategically onward :)

(BTW, I don't know where she wrote/said this -- let me know if you do!)

Book of Eli

I went to see The Book of Eli tonight. I'm not going to review it (or give spoilers) here, and I'm not even particularly going to recommend it, although it has plenty for thought and discussion and so it is worth your time if that's your interest (and if you can stomach the violence that earned it an R rating). If you do see it, I hope you'll attend not only to the main theme (about the book and all it carries with it), but also to the ways in which gender, race, and ethnicity are marked in the film, and that you also consider how cultural values (such as literacy, physical appearance, cleanliness, sexuality, and nonviolence) are proscribed/inscribed in the story. Watching it with a disability lens was fascinating for me, as this highlighted (intentionally or unintentionally) some of the movie's major themes around power and perception; this lens also showed some of the film's major gaffes (making me doubt, for example, that people with awareness of disability were involved in the film making -- an experience somewhat like watching some stories about women that are written by men, when all you can do is ask "what were they thinking?").

But as I'm reflecting on all that tonight, I'm particularly struck by one specific quote from the film. Without giving anything away, I can say that a female character has left a town, and a male character is telling her that she should return. And then she says something like, "but that place sucks!" And he replies, "then go change it!"

In my everyday life, I've been feeling increasingly frustrated lately by people (myself included) who seem to spend a good bit of time and energy complaining about what's wrong, what they don't like, what "sucks." And so I loved this comeback -- not arguing against, not empathizing with, not taking a position either way -- just simply saying, "then go change it!"

In real life, it's never that simple, I know -- there are good reasons for venting our frustrations and articulating what we see as wrong, and there are times when it's not at all possible to just "go change it." And beyond that, most of life is not even so clear as this, and so the aspect that I think "sucks" may be quite different if viewed from another perspective or in the context of the bigger picture, and so my attempt to create change might in fact be disruptive, harmful, or just plain wrong, particularly once you take privilege or other factors into consideration. But still, this simple language of "then go change it" struck me, as a helpful reminder that just complaining, or even complaining and leaving, is not always our only option.

You'll have to go see the film to find out whether she did "go change it" -- and I'd recommend coffee with a friend afterwards to discuss whether this was even an appropriate exchange, in the movie or in our lives. But, at the very least, it strikes me as a good moment for reflection.

On Anniversaries

Tomorrow is my 12-year anniversary at my job. Or, more accurately, at my employer -- I've probably held at least a dozen jobs here since I received my first employment letter, but the paychecks have all come from the same place. As is often the case with anniversaries, it's leading me to be a bit introspective tonight, recognizing and reflecting on the distance and closeness between "then" and "now." How I've changed in those 12 years, how my institution has changed, and whether I saw any of this coming :) .

I've never been the kind of person who has planned particularly far in advance as far as my life is concerned; if you ask me where I'll be in five years (or even one year), I probably won't be able to answer. So I had no plan twelve years ago that I'd still be here now, let alone that I'd be in my current roles. Hitting another anniversary is always a bit of a surprise.

What's striking me tonight is that our discourse -- or, at least, the discourse of country music -- actively reminds us that we should attend to things as if they may not last. "If tomorrow never comes" is just one of many examples in my head tonight. In some ways, we (or I, at least) brace ourselves for change. And change is always right around the corner, an unavoidable element in the cycles of life. But I don't remember being warned about the opposite. What if tomorrow keeps coming?

This question could lead to deeper musings, of course, as to think about the disposable nature of our society, or of the human challenges of embracing both temporality and permanence. There are more than enough moments in life where we expect something will last, only to be disappointed or surprised when change does happen. And, of course, there are plenty of other moments that ask us to make intentional and thoughtful commitments to or investments in the future. But tonight I'm simply sitting in a bit of wonder at this particular landmark, and imagining whether a decision I make tomorrow or next week or next month might be one that I am still carrying twelve (or more) years later, and feeling both the weight and the possibility of it.

And, of course, wondering where the next twelve years will take me/us.

New Glasses

This will be quick tonight, because my eyes are still blurry -- I got my vision checked today, for the first time in five years. And yes, I have new glasses. If the optometrist is right, books and papers and even the computer screen will actually be clear when I read them tomorrow (I'm guessing he doesn't mean that metaphorically though...).

Anyhow, as I was sitting in his office waiting for my eyes to dilate, but not really able to do anything but sit and think, I was reflecting on how funny eye exams are, particularly the part where they try pairs of lenses and you're supposed to say which one is clearer. I always feel like I'm guessing. A or B? B, I guess. A or B? A, I guess. It seems almost impossible for me to tell the difference between the two choices, and it gets worse the further we get into the exam. I do my best, but it still feels like I'm just making up my answers. And yet at the end, the optometrist writes me a prescription, and, sure enough, the new glasses actually do help me see better.

Funny how life also seems like that. At least, the "making it up" part -- here's hoping the clarity also follows.

(p.s. -- I found out that it's called a phoropter, and the image is from wikimedia commons.)