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Sunday 11 February 2007

Info Post
In August of 2005, before my medical crisis that November, and prior to the long hospital stay and the thoughts and prayers offered by so many good people, I wrote Losing my religion, part 1 and part 2. I've thought on writing the promised part 3 many times since, but haven't been able to clarify my complex feelings enough to write more.

But last week, Chris Clarke of Creek Running North (and, recently, Pandagon) lost his beloved dog Zeke and was compelled to respond to the many blog comments and emails he's received that insisted on reassuring him about an afterlife for his lost friend when he has made clear he is atheist. He felt the need to specifically ask the people of the internets to stop pushing their beliefs upon him while he grieves. He said this:
But when people persist, in what they know is one of the worst weeks of a person’s life, in telling that person his belief system is wrong and misguided as a way of ostensibly showing sympathy and compassion, that, my friends, is an example of religious intolerance. When people respond to a politely worded request to can the heaven stuff by ramping up the heaven stuff, that is an example of religious intolerance. When a person has to take time out from grieving to forgive people who’ve made him feel a lot worse, telling himself that he has to give them slack because they’re upset over the death of his family member, that he has to remember they’re just trying to make him feel better with promises of meeting again despite his express request, that is a symptom of religious intolerance.
And I find myself thinking: This is why I quit going to church and why I cannot reconcile the community I experienced as a less visibly disabled child with any sort of meaningful participation in organized religion as a visibly disabled adult.

From the perspective of so many people, being disabled is like living the worst week of your life all the time, and therefore justifies the imposition of their religious beliefs on you all the time. You know, to be helpful. Combined with the persistent beliefs in many religions -- reinforced by religious texts -- that disabled folks are afflicted because of past sins or will only have worthwhile lives when healed, the weight of other people's religious convictions can drive away even true or possible believers who are disabled. It's been the case for me and some commenters here.

To clarify, I'm agnostic, and also so distracted by the disability attitudes of others in a religious environment that I cannot separate the good aspects of religious community from the overbearing ableist ones. Even in non-religious settings, the "God bless yous" from strangers can be impressive in quantity and fervor. It's clear that an enormous portion of the population believes disability equals a greater need for prayer. And I'll say it now: that just is not true. By and large, this determination that disabled people need special spiritual consideration has a lot to do with visual disability and the perception of who is and is not suffering. For example, when I was a pre-wheelchair teen struggling to walk and not trip over clumsy feet, I did not get the "God bless yous" that I did when I began traveling by chair. From a practical perspective, my life became easier and less exhausting when I started living on wheels, but the public perception seemed to be that I needed more input from God.

Disability is not equivalent to suffering. It's reasonable to say that impairments and the challenges that surround them can and frequently do involve a variety of human suffering, but the relationship is not certain or necessarily acute and it's insulting when people assume that it is. Pain, hardship and fear are qualities of human suffering, and during my medical crisis that has ended with my continuing use of a ventilator to breathe it is sometimes hard to separate my social experience of disability, the essential bodily experiences of my neuromuscular disease and the impairments it has caused, and the slightly different quality of having an illness or deteriorating condition that does definitely cause suffering. Exploring this has led me to write much more personally here in the last year.

One can be severely impaired, conscious of it all and not feel in need of special kindness from other people, though, of course, general kindness is appreciated. That was the position I typically felt myself in when I began this blog and it is how I feel most often now on a daily basis, though it would be true to say I experience more pain, hardship and fear than I have before in my life. My health and upkeep are much more complicated than they've ever been before and won't ever improve significantly.

My parents and most of my extended family are church-going Christians who probably cannot separate their lifelong relationships with their rural communities from their membership in a church congregation. Through them, I've been offered spiritual support from their communities, to which I don't really belong. While I was in hospital, I cherished visits from my parents' pastor and the rehab institution's chaplain, mainly for the focused attention to my spirit and emotions without familial baggage. But I also specifically appreciated prayers, though try as I might, I cannot fully connect with the religious purpose of them. Because I needed the emotional support so desperately for a time, I found myself able to translate other's prayers into what I could use -- loving thoughts and positive energy.

So I don't participate religiously anywhere and feel unable to explore my spirituality in public religious settings because of the "special needs" status so often afforded disability. If there were a Unitarian congregation anywhere remotely near my home, there's a chance I could work something out, but I live in a conservative rural area and there is no thoroughly liberal church available to lessen the overall dissonance and make me feel welcome enough to belong. Maybe that's optimistic or wishful thinking about Unitarians. I had mostly good experiences with a congregation in Arizona when I visited it, though it seemed less challenging mainly because I was able to attend with openly lesbian friends. Acceptance of all kinds of difference is spiritually connected -- this I know.

Hugo Schwyzer, blogging about his friend Chris' post and his own religious beliefs writes:
Do I pray for non-Christians? Sure I do. Do I tell them about it, as if I’ve done them a special favor and tucked the spiritual equivalent of a $20 bill in their purse when they weren’t looking? No, I don’t.
He describes how he sometimes carefully parses his words to convey his loving thoughts to people in ways that don't distract by imposing his religious beliefs. I'm much more uncertain about my relationship to prayer, yet less careful of what I say to others going through difficult times. Ironically, that's a reflection of my ambivalence rather than any form of religious certainty. I certainly don't push any particular religious doctrine (since I don't have one) but to me it feels more like using a French phrase in a sentence -- if infrequent and unpretentious, only a little cultural conversion is required. Then again, I also don't offer these good wishes unless I've been told of actual suffering and hardship, as opposed to something I assume.

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