Sacred Images – A Meditation on Survivors’ Guilt

by Kari Pope

So I was sitting in church one Sunday recently—how I manage to endure life as a practicing Catholic PWD is, as C.S. Lewis would have put it, “another story and will be told another time”—when I found myself unexpectedly provoked by the priest calling “all people…equal in dignity, but not equal in ability.”

It made me flinch. But not for the reasons one might suspect. Certainly I’m no more enamored than many of my decidedly anti-Catholic acquaintances of those passages of Christian scripture which would seem to render us as helpless victims, ruthless villains, or something even further down the ontological scale. But I also—and this is the important bit—harbor no particular illusions regarding my own so-called ability level, despite the fact that, medically speaking, I have a “case” of CP that is classified as “mild.” I walk independently, most of the time. I talk, speaking clearly and concisely enough to coach legions of ESL students through the most complicated tongue twisters I can dream up. I bathe myself—albeit while sitting in a shower chair—and dress myself, even occasionally in heels for dancing in nightclubs. But I wouldn’t be telling you about any of it right now had I not finally learned to master my sense of “survivors’ guilt.”

This, like many phenomena unique to and yet typical of an increasingly collective disability experience, mirrors the experiences of human beings in many communities. You yourself may recognize it from any of the following: Your friend died in the car accident you caused while driving; you flew back from Japan the day before the March 2011 earthquake; you got over the swine flu, yet your cousin in Mexico didn’t. You can’t shake the feeling that you might have done something, perhaps even given your own life, so that another could have been saved. My twin sister once confided to me that, “I used to think that if I had not been born, then you would not have had cerebral palsy.”

I didn’t see what she had meant by that until I began to come to terms with my own lifetime of internalized ableism. Throughout that lifetime, especially upon meeting other PWD, I had been plagued by thoughts such as:

“She uses a wheelchair—why not me?”

“He’s blind and deaf—why not me?”

“She can’t talk and besides that, she drools—why not me?”

Growing up under a medical and charitable model of disability, I was presented with the image of a false god: one called by Nancy Mairs  the “handicapper general,” who doles out disadvantages at will while adding or subtracting inherent value based on the “severity” of the disadvantage in question. Consequently, I fell to the idea that such dramatic—and therefore negative—differences in ability should indicate the same such differences not only in quality of life, but also in the grace to live life fully.

So I flinched that day in church, not at Father’s words, but at my guilt upon hearing them as I realized that, “Surely, if dignity is equal, then ability matters not at all!”

Now, lest you imagine that I should therefore either stop going out dancing or else start standing up to shower, let me put it to you as Martin Luther King, Jr., did:

“If a man is called to be a street sweeper, he should sweep streets even as Michelangelo painted or as Beethoven composed music or Shakespeare wrote poetry. He should sweep streets so well that all the hosts of Heaven and Earth will pause to say, ‘Here lived a great street sweeper who did his job well.’”

I love this quotation for the sheer force with which it moves folks to consider the contributions of every person, beyond reference to the biblical, medical, or charitable images that have poisoned people’s perceptions of ability and disability alike for eons. I appreciate the fierceness with which Dr. King dared to dignify a laborer among artists. Yet I find his thought problematic when I consider that he lived in a time at which a PWD’s chances of being hired as a street sweeper—let alone as a painter, musician, or writer—were slim to none. And in our own time, while our chances might be slightly improved, Lateef McLeod, Sunny Taylor, and others have boldly called into question the validity of traditional—read: ability-driven—measures of productivity and success at work.

I now call upon those hosts of Heaven and Earth for a new image: one driven as purely as possible by the dignity of people everywhere. Like many of my friends and colleagues in the disability community, I’m tired of the assumptions about, projections and classifications of disability that turn my honestly-lived experiences into a metaphor for someone else’s pain, struggle, or even triumph. At the same time, I’m not naïve enough to believe—whatever else I may cling to—that honestly living means being accurately perceived. That said I can at least hope for greater accuracy when I ask that, if you insist on making of me a metaphor, then please let it be a metaphor of my own choosing.

As a matter of fact, I seem to have found one already. Some weeks after that day in church, I happened upon this quote from French lyric poet Ponce Denis Ecouchard Lebrun:

“The butterfly is a flying flower, the flower a tethered butterfly.”

I was struck by the elegant counterpoint of two beings outside the scope of humanity, contrasting yet parallel images of beauty that invite me into a world where old comparisons fall away, where guilt does not apply, where I can “live and move and [be]”* on entirely new, entirely dignified terms.

Just now, however, I won’t elaborate on precisely what those terms might be. Rather, I will leave my fellow PWD to ponder whether they, too, have tethered butterfly moments and flying flower moments, and leave all of you to wonder whether I tend to be a flying flower on the dance floor or in the shower. The answers, if anyone ever dares wonder aloud, just might surprise us all.

*Acts 17:28, Douay-Rheims Bible

The Image of God: A Few Thoughts on Disability & Faith

by A’ishah Hils.

Disclaimer – This is heavily skewed by my own faith background and informed by my experiences in Buddhist, Christian, and Muslim communities. It is not a theological investigation, though I’d be happy to talk theology via email or in the comments; it is more of a personal observation based in my own study and experiences.

I have always been disabled, religious, and queer. These are some of the things that have made up my identity for as long as I can remember, although I didn’t come into critical awareness of all of them together until my teens and some of the labels have changed over time. As far as I know, I was born this way, though whether or not I was born this way does not matter as much to me as the fact that I am this way.

I have always felt simultaneously at home and on the outside in faith communities. While I am just as connected to the divine in my house, there is something powerful to me about being in spiritual community, but going to a temple, church, or mosque and not knowing if I will even be able to enter the prayer area makes me feel unwanted.

I didn’t begin to think critically about how disability and faith intertwine until much later in life, though. The first time I deeply thought about the connection between disability and faith was in college as a religious studies major, when I read “Mildred, is it fun to be a cripple?”  by Robert Orsi, which is a chapter from one of his books that delves into discourses of faith and disability in Catholicism. I saw my own faith traditions in the article, but more importantly, I saw how some religious narratives about disability are common over many different faiths – and how deeply those religious narratives are ingrained in our supposedly secular society.

Some of these narratives include: disability is only or primarily a source of suffering and tribulation; it is a spiritual blessing to the disabled person to suffer in silence; improving life here isn’t that important, because being disabled means we’ll be more blessed in the next life; there should be a top-down charity relationship between disabled and non-disabled people; disability is a punishment for something we have done wrong and thus we might be impure or cursed; curing disability is a miracle. These narratives come from a history of institutionalized religious oppression of the disabled, and many of them are related to the narratives used to oppress other minorities (such as poor folks).

They also form the basis of how we understand disability in American society. They have created a culture of top-down charity, denying disabled people our agency. Most financial resources are put into researching a cure rather than improving our daily lives. The public discourse about us revolves solely around suffering; we are not seen as multi-dimensional people who experience pain, pleasure, joy, and sadness along with everyone else. And we are a source of terror; it is easier to pretend we are invisible because the reality of our experience (or what people think is our experience) is seen as worse than death by many non-disabled people. Non-disabled people often live in fear of turning out like us, or having children who might be like us, or even having to interact with us in all of our stimming, spazzing weirdness.

Nowadays, most of my work involves talking about disability, self-advocacy, and accessibility, and I often do this in faith communities, which gives me some opportunities to address these narratives. In Abrahamic faith environments, I usually begin by saying that we are all made in the image of God and God doesn’t make mistakes (we hope!). Most people I talk to agree with this basic assumption. For many of them, this assumption is why they are deeply concerned about the sanctity of life. Except – very few of them think about disability (and for that matter being queer) in the context of this very basic assumption. Being disabled and queer isn’t seen as a basic part of who we are, how we were created – it is seen as a spiritual trial we must get through so that one day (in this life or the next) we might be cured and that way we can be good able-bodied and straight religious people.

Because of that inconsistency, I know many religious people who see – in the absence of any miracle cures – euthanasia, abortion of disabled fetuses, and sometimes even murder of disabled youth and adults as a spiritual mercy. Oddly enough, those same people rarely seem to see disabled people being accepted into society, having self-determination, having access to good health care, and being treated as more than a source of pity and inspiration as a spiritual mercy.

To me, this view directly contradicts what is said in the Bible, the Qur’an, and many other religious texts about the nature of human beings. For me, as a person of faith, it all turns on this: if there is a divine source or some sort of spiritual meaning to life, and that divine source doesn’t love disabled people and think we are just as deserving of full lives as non-disabled people, then there is no reason to believe. Furthermore, if that divine source is not opposed to oppression of disabled people and other minorities, then there is no reason to believe. To paraphrase the words of Black liberation theologian James Cone, if God is not on the side of the oppressed and against oppression, then God is irrelevant to the oppressed.

Most religious institutions have a history of oppressing disabled people, but many of us – or at least I – cannot deny the fact that I am a person of faith. I cannot deny my faith, and so I must resist the entrenched ableism in religious communities. Because that ableism informs so much of the rest of our society, I believe we must all resist it.

I believe and will always believe that I was created in the image of God and God doesn’t make mistakes. But sometimes, like Jean in Harriet McBryde Johnson’s book Accidents of Nature, “I yearn for a Bible story about a cripple who isn’t cured.”

Vigil Report: Virtual Vigil and Boston

by Erin Lewy

I was fortunate enough to attend vigils for George Hodgins both virtually and in Boston.  Each left a lasting impression on me.  At the virtual vigil, we were lucky enough to have a video connection to DC.  While we weren’t able to see much, we received audio of Ari Ne’eman’s words.  The experience was powerful and left me feeling connected to a larger movement, underlining exactly why I was there and energizing me for Boston.

Ari’s words, clearly from the heart, were never written down.  At the Boston vigil, there was a lot of impassioned, off-the-cuff speaking too.  I was ultimately able to see the autistic self-advocacy movement first-hand, from M., who spoke passionately about disability from within her faith community in New England, to “Squid,” who missed the bulk of the virtual vigil but came with the intent of lighting a candle at home and reading the names of four hundred and fifty eight murder victims with disabilities.

Thankfully, video will be available from several vigils, including the vigil in DC.  When this footage is made available on YouTube, we will bring it to you, so that you can experience what several of us did on the night of Friday, March 30.  A crowd of thirty filled Farragut Park in memory of George, a number which we were all proud of.  Still more spilled out in virtual space, expressing our fear, sadness and outrage.

Through these vigils for George, I realized that we were all handling our fear and sadness to the best of our ability.  We came together, over a period of two days in eighteen cities across the United States, to mourn and also connect.  I felt this the most strongly when I met the director of Second Thoughts, an organization in Massachusetts fighting the good fight against a “Death with Dignity” act being proposed on the 2012 ballot.  I am fortunate to have such a resource close to me and yet also terrified that it is necessary.  As our conversation turned to euthanasia and assisted suicide, it was underscored for me that there are people in the world who think it’s perfectly valid to ask us all to disappear, to die with “dignity” and leave the fit, the healthy, and the “normal” in peace.  With such a law on the books, I know that my people could easily be coerced and worse, and suddenly these acts would be legal.

As I thought about my own challenges in reaching the Boston vigil, from inaccessible streets to a terrible lack of direction, I was heartened that I had made my way.  I made several connections which I know will continue to blossom over time, and really, in the face of sheer tragedy, there is nothing more I could ask for.  Through this project for George, I have found the community I was desperately seeking, and though we are bruised and battered we are never broken.

People gather with candles in Boston Common to remember George Hodgins and other people with disabilities murdered by family and caregivers.

Photo by Burton Pusch