May 14, 2011

Seeing God, perhaps


Arrr.
Originally uploaded by Citizen Rob
"[We] see the face of God within the disabled. Their presence is a sign of God, who has chosen [quoting St. Paul] 'the foolish in order to confound the strong, the proud and the so-called wise of our world.' And so those we see as weak or marginalized are, in fact, the most worthy and powerful among us: they bring us closer to God." -- Jean Vanier, "Our Life Together"

I didn't know what to think the first time I read these words by Jean Vanier. They were quoted in Ian Brown's The Boy in the Moon, an extraordinary memoir written by the father of a profoundly disabled son. Brown's story is different from mine; his son Walker's disability is as extreme as Schuyler's is subtle. And yet in reading his words, I am struck by the similarities in our feelings about our beautiful broken children, extending even to some of the language we use as descriptors.

(Ironically, we differ slightly on the now-tiresome "r word", which he uses in some circumstances not related to people. But while I choose not to use the word as he does, I also recognize the unique position of the special needs parent to repurpose words like that, and the guilty pleasure that comes from the reactions of typical parents when faced with this forbidden word from the mouth of such a parent. I totally get that.)

When I read the quote by Vanier, it felt a little like some of the well-meaning but pretty uniformly awful things we've been told for years, about how kids like Schuyler are here to teach the rest of us something, or that she came into our lives because we were super special wonderful parents, or that God never gives us more than we can handle. (That last one is particularly heinous; ask any parent of a different child, and they'll be able to name people of their own acquaintance who have been given much more than they can bear, whether by a cruel God or wicked chance.)

But when you look deeper, it makes a kind of sense. A writer friend of mine was raised as a Quaker, and to her it was completely familiar. To the Quakers, God is a light that exists in every human, an intrinsic quality rather than an external force (ie. grumpy man in the sky, bossing everyone around and breaking stuff when he gets mad). We find God by seeking that light in others. Finding it within those whose lives seem the most remote from our own, and relating to those people instead of marginalizing them or running, that's a real path to seeing God.

I like that. I'm not sure I subscribe to it from a spiritual perspective, although it feels valid to me. My own spirituality runs outside of religion, as you probably already know. Recently, I received another critical remark about my beliefs. "The atheist pulling out the phrase 'Child of God' only when it suits you is so very distasteful." Of course, I have never claimed to be an atheist, not once, but there's a certain amount of dismissiveness that comes in response to calling oneself an agnostic. This commenter doesn't think I'm an atheist. But she does know that I'm not a Christian, and in her eyes, that's not all that different from believing nothing at all. Not being a Christian is offensive to a great many people, as is the idea that Schuyler isn't here to teach us all how to be better people.

For his part, Ian Brown doesn't believe that his son Walker represents the face of God. He sees instead the face of what it means to be a human being, both in his son's beauty and his brokenness. He sees the depth and complexity of his own love for his son, who has taught him (and I can't tell you how much Julie and I love this phrase, or how many times in the last week we've quoted it to each other and have wanted to quote it to people who are in our world and yet very much not) "the difference between a real problem and a mere complaint". For him, his son is a mirror.

I like that, too. In the faces of kids with disabilities, whether extreme like Walker Brown or mostly invisible and insidious like Schuyler, we are presented with the opportunity to truly explore what it means to be human. Brown says that Jean Vanier believes the severely afflicted force us to face two difficult questions. "Do you consider me human? Do you love me?" He believes, as I adamantly do as well, that as we meet people with disability in their own world, our answers to those questions evolve and solidify. We start, shamefully, with fear, of their appearance and the way they behave, and, I'd suggest, of the proof of the frailty of being human and how it can strike any of us, particularly our children. We move on to pity and to the stage where we help them and show them respect, but still regard them on some level as inferior.

It is only when we enter into real relationships of authentic depth that we are transformed by the broken among us. It is then, Vanier believes, that "they bring us closer to God".

As an agnostic, I nevertheless believe, on some level, that this is true. God? Maybe. It certainly brings us closer to understanding the truth of humanity, the hard-to-grasp reality that all of us have worth, and that worth is intrinsic, not something determined by the rest of us, or by an outside divine force. Other cultures understand that better, I think. In shamanistic societies, children who would be diagnosed as autistic or developmentally delayed or ADHD and medicated within an inch of their lives in this country are identified and groomed from an early age to serve as shamans, holy and in touch with the universe on a unique plane that is denied the rest of us. Is that wrong? Is it ridiculous or primitive? Or does it recognize a fact mostly lost on Western society, that even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it?

In an interview with NPR, Ian Brown said something that hit close to home for me. It felt like truth, a cautionary truth.

"I think a disability masochist is somebody who made the decision to make their disabled child the most important thing in their life and the only important thing in their life. And they commit to that position and then when reality suggests there are other decisions, they get angry about it. It's like anybody who concentrates on one point of view and only one point of view. If you contradict them, they get nasty. You see it in political life every day. You often hear from these people something that drives me mad. It's one of the reasons I didn't want to write a book like this, and one of the reasons it took me so long to write the book was because I didn't want to write a 'misery memoir.' These misery memoirs, in addition to being badly written, you get the same sentimentality all the time: these are very special children, given to very special parents, by a very special God. The God thing is not often there, but it's often tacked on. And I think to myself, if Walker is God's idea of a gift, then God needs to read Emily Post. Because a jar of jam or a bottle of wine would have been fine, thank you very much."

I fear very much that I have become what he calls a "disability masochist", although honestly, I wonder sometimes how one avoids that trap. But for me, in ways that are probably much more difficult for parents with as impaired of a child as Brown has, it's more complicated than just making my disabled child the center of my life. I have done that, but it's not always or even mostly about her disability. In part, it happens because of the all-encompassing, complicated, enriching but enslaving love I feel for Schuyler. I suspect it's also because in trying so hard to understand the things that she desperately wants to tell us, we pay much closer attention to Schuyler than most parents do to their typical children. Schuyler doesn't have throw-away statements or everyday sentiments. We listen with every ounce of attention that we have, we strain to understand, and in doing so, we are treated to peeks inside a place unlike that of any other person in the world. Perhaps literally so.

There are moments, fleeting and wonderful, where it is possible, not to forget exactly, but to put Schuyler's disability into the background. It's always there, but sometimes it's unimportant, and what we are left with is a very simple (but of course not simple at all) joy of her existence. We can stop trying to make her fit and just experience who she is.

It happens, although the world has a funny way of popping that bubble. Last night, as we ate dinner at a fast food place, Schuyler was unusually joyful and chattery. I love when she's like that; I rarely try to stifle her in those moments, even when I can see, as I did last night, that she is drawing attention. This time it was a little girl, a few years younger than Schuyler, sitting at the table next to us. As we got up to throw away our trash, I heard her ask her father if Schuyler was retarded.

And thus the world pushes back in.

Schuyler and her broken friends aren't a gift, from God or anyone else. They exist on their own terms, as human as you or me, but they do give us the chance to look into something bigger, God if you like, or perhaps simply our own humanity, with all the ugliness and beauty inherent in our selves. We have a choice, whether to listen or to step back in fear and ignorance. I can only say that one of those choices is, even to an agnostic like myself, indescribably miraculous.

28 comments:

Galen said...

Rob, this is a thoughtful and thought-provoking post. I haven't read any of Vanier's writings, but am familiar with the L'Arche communities which he founded, which impress me with their philosophy of the disabled and non-disabled forming an intentional community and spiritual life. I also spent many years participating in Quaker meetings for worship, and although I've been unchurched for years, the faith of the Friends (Quakers) still seems closest to what I believe. So much of what you write resonates with me. No loving, all-knowing, all-powerful god in the heavens would have sat by and let a little 2 year old boy be burned in hot water, cry in pain for 2 weeks, and then be shaken, beaten, and thrown against a wall. But God, the inner Light, was in that little boy, and could not be extinguished. He is my son, now 30 years old, a kind and generous person.

Loves Pickles said...

I think that people who go on about "gifts from God" are missing the point. Many people seem to use that notion to help them through tough times, but I personally think it's kind of a lazy and simplistic way to think. Every single thing on this planet is a gift, but every gift comes with it's own burden (and in my evolving beliefs, I believe that the earth and the entire cosmos itself IS god, and that we are all veins or cells running through the body of the divine). In my own spiritual search (and as an agnostic, myself) I came across something that struck a chord that resonates loudly with me. That GOD as an anachronism, G.O.D., stood for Generating Force, Organizing Force, Destructive Force. For me, that definition of GOD works more truly than any other mythology (Christian or otherwise). It has nothing, NOTHING to do with how special someone is or how horrible or immoral or kind or sweet someone is. It simply IS, by the very nature of this world. We tend to put divinity in human terms because that is how we make sense of things. This is why stories, parables and mythologies are born (and I do not for one second think that mythologies are unimportant, in fact, they are very necessary and a wonderful tool for our minds to assist us in understanding complex forces). However, I think it is completely and utterly folly to assume that deity is anything resembling human form, to make these comparisons in a literal sense is dumbing down the raw power of the unseen forces of this world.

I like that you bring up shamanism, here, because every time I read your posts, I think to myself, "There, SHE is a shaman." She has uncanny wisdom that comes from other places, she is "outside society", she is ostracized. She breaks again and again and re-heals into something different, wonderful, beautiful, and painful. Something that makes your very heart ache with the awesome wonder and suffering of it. And through that, she IS a teacher. Maybe she'll choose to expand on that, or maybe she'll just do what we all try to do and get by. Shamans of all cultures seem to have blood that is perhaps flowing from a more direct link of the veins of G.O.D. Maybe it's like a vortex or something, and the veins of the shaman somehow converge in the middle, drawing more knowledge and power than others. Who knows. At any rate, ask any true shaman and I'm sure they'll tell you that to have those "gifts" bestowed on them comes at a great, great price. They suffer. That is their nature.

Becca said...

I know you are old enough and wise enough to know this, but can I just say (as a person of faith, though not of Christianity) that the idea that there are certain words or phrases that only Christians are allowed to use is kind of absurd? It's not like being baptized opens doors to the English language. Whoever said that your use of language was distasteful...well, I find THEM distasteful. So there.

Aside from that, thank you again (and perpetually) for the honest way you talk about these things. I have a sister with a disability, and I admit that I tend toward the "god made my sister this way for a reason" sentimentality, but when describing Meg to others, I am purposefully blunt and pragmatic, because sentimentality has a tendency to bend towards pity, which is something that my sister does not need (and i don't either, frankly). i want people to deal with my sister honestly. encouraging them to see her as some kind of angel-child does not accomplish that.

Quakers have a phrase: "This Friend speaks my mind." It's sort of an "Amen, brother!" but goes a little deeper. It's an acknowledgement that the light of god in the other person said something that connected with/reflected what your own light was thinking of at the time (um, i'm not sure if light thinks, but you know what i mean). I don't want to project a theology that you don't believe in onto your person, but in response to "even the most profoundly broken among us have value, and it is up to us to see that, not them to prove it"...This Friend speaks my mind.

kim said...

"To love another person is to see the face of God"
Simplistic but, yeah, that is it for me. Just that simple. I'm not very complicated. Love this piece, Rob.

Kate J said...

Reading Vanier in the early months after our daughter's diagnosis helped me to process the anger I felt when people would throw out the "God only chooses special people for special children"-type lines. I think such platitudes only help to keep themselves at arm's length- "Oh, no, not me, I'm not that 'special'." Now I'm more a fan of "God doesn't call the equipped, He equips the called." If we accept that. All I know is that we are better people than we might have been.

Penny said...

This piece speaks so much to me Rob. As a parent of a daughter with autism and a daughter with Type 1 diabetes and a pre-teen 'typical' (whatever that is) daughter, I can tell you quite frankly that I have had enough and sometimes I know I cannot bear it. Yet time and time again people tell me that 'God doesn't give me more than I can handle' - Well, He did. He most certainly did. I am getting through, but that idea that I am somehow more of a 'Saint' for handling it all leaves me cold. I am doing what every parent would do - getting through, day by day. My world is much different than theirs and I think their statement to me about God only reflects their real statement that they are afraid to say and afraid to think - 'Thank God it wasn't me.'

Maybe all of our children are 'gifts from God' and that includes disabled and non-disabled children. The typical pre-teen is no less a gift than my daughter with autism. What my child with autism gives me is a chance to look at the world differently, through a different lens, no less valid than my other children. There in lies the rub, no less valid. Hard to find people to agree with me on that one. We want to say that our children with autism are somehow more enlightened than our others, when perhaps it is just the vantage point from which they see.

I have read Ian Brown's book and I find it lovely and refreshing. It is honest and real and really focuses on what it means to just exist in this world. Thank you for bringing it as a topic. You write eloquently about his words. Thank you.

Tracey said...

..."as we meet people with disability in their own world"... Great post, but this is what stood for me. I guess I have been unable to meet my stepson in his world. I want him to live in my world, not his. I now realize that this is 1. not possible and 2. my fault for even thinking he could or should. This will require a lot of thought. Oh, and Schuyler may not be a gift from God but she is a gift none the less.

Elizabeth said...

There's quite a debate going on about Brown's memoir -- or the interview he gave to Terri Gross the other day -- on this blog: http://www.disableddaughter.com

I find your take on the whole thing really compelling -- your writing is so beautiful here -- just perfect. Thank you.

Atkins said...

Paragraphs like that last paragraph make life worth cheering for.

Roo's Mom said...

Yours is one of my favorite blogs because I love your writing. I am a person of faith but I don't see children as "gifts" per se. But, if they are "gifts" then all are, with disabilities or not, challenging and "special" in their own ways. I often call Roo my easy child, compared with the trials and tribulations of raising her so-called typical teenage sister.

The greatest gift my daughter with Down syndrome has given me is offering me entry into the world of people with disabilities and the families and friends who love them. I have been met so many incredible people since she was born and see the world differently now. As hard as some days (okay, many, many days) have been, I would not trade life with her for anything in the world.

yellowfattybeans said...

She isn't retarded. Any amount of time in her orbit, whether directly, as a satellite or even just being in the wider galaxy, as some of us as readers are, confirms this. Schuyler herself will confirm this in a few years. Keep fighting, Rob & Julie.

Julia O'C said...

I have nothing of merit to add, except that I really love this post - and it came on a day that I really, really needed it.

Sharon S. said...

Rob, when I heard Brown's interview on Fresh Air and heard him discussing "disability masochists," I thought of you NOT because I thought you've become one. His description of that term reminded me of your discussion of the "Holland" parents.
As a parent of 2 neuro-typical (whatever that means) daughters, I think most parents struggle with trying to balance putting our children at the center of our lives with the 'non-parent' aspects of our lives. I heard Brown saying that the disability masochists make their child's disability the center of their lives, not their child, and there is a difference.

adequatemom said...

I just read Ian Brown's book, after becoming familiar with Walker's story from his series in the Globe and Mail (believe you linked to that some time ago?). I agree with so much of what he has to say, including his rejection of the "special angel" stuff and his quest to find meaning and value in Walker's life FOR HIS OWN SAKE, not others. Very interesting read - thank you for sharing the original link, and for sharing your thoughts on the book.

Erica said...

AH! Your writing is so beautiful. This is a wonderful post. I have to agree with Sharon - it's difficult for all parents to try and have a life outside our children. I think especially those of us who are over 30 when we have our children. The children are so wanted, so loved and we made this big profound decision to have them. It's wonderful how you are able to look at yourself critically, it helps me to do the same for myself.

ibrown said...

Brilliant post, as is often the case. And I would say the last thing you are is a "disability masochist" (a phrase I am beginning to regret), because you always describe Schuyler's life as a life first, and a disabled life second (or third or tenth). You have always made the case, in a variety of ways and stories, that the disabled are human beings with a contribution to make, no matter how subtle the contribution may be and how reluctant some of us are (and certainly I am guilty) to recognize that contribution (because it forces us to redefine what constitutes a successful life). Anyway, you beautifully describe the winding thoughts of an honest parent. Thanks.

Rob Rummel-Hudson said...

Ian, you have no idea how much it means to me to hear that from you.

I remember reading the "Boy in the Moon" articles as they were posted online, back at the end of 2007. I remember linking to them here, and seeing similar links all over the internet, by parents of kids with disabilities who were all saying the same things, that oh my god, this is exactly right, this is exactly how this is.

Which is silly in some ways, as we've all got wildly different lives and different kids. But there are universal truths, and I feel like you present those like touchstones. Thank you for that.

amylia said...

Your candor and insight is refreshing in this day & age (or any, methinks). Thank you for sharing your beautiful prose and thoughts with us once more.

krlr said...

This is one of my favorite posts, ever. I've toyed with how to frame this idea of feeling incredibly grateful I have my daughter in my life - what a miracle it is I have either one of my kids (esp. since we lost our first) - but without using loaded & cloying religious terminology. Your last paragraph summed it up beautifully. I like the line from Invictus too, "I thank whatever gods may be".

Beth H said...

Rob, I wonder if you've seen the interview in NY mag with the creators of How I Met Your Mother? They address the use of "retarded" in the paragraph: What are the best and worst ways to push the envelope?

Nicole P said...

You know how I feel about God. You also know how I feel about seeing God in people - how our most painful or joyful moments are the ones where just for a second (hardly longer) we can actually glimpse the divinity that - in the end - connects all of us.

I cannot imagine what it must be like to live in Schuylers world - though I would bet it is gorgeous, unsettling, sad, and also filled with light - and she is the perfect reflection of that world. But the struggle to communicate is one that I have a hard time fathoming at all. What I wouldn't give for just a day to know REAL victory in expression. Not "wow, this reads great" but "wow, they understood me, they get me, they've reached me..."

A gorgeous post, Rob. For reals.

Stephen said...

Rob, I know for a fact that, for a very long time, I was a disability masochist. Maybe he has coined a term that we'll see again.

I missed that NPR interview, although several people told me about it. (His subtitle is almost identical to mine, but at least there's daylight between our stories.)

At any rate, making sense of the experience of having a disabled kid is a lengthy process that will challenge anybody's beliefs. It's safe to say that after 26 years I've slowly moved beyond being a disability machocist, but I still understand that mindset more clearly than the one I'm settling into.

Thanks, as always, for sharing your thoughts so eloquently.

Me said...

Given how much you liked Vanier, you might also enjoy this interview with the parents of an autistic son.
http://being.publicradio.org/programs/2010/being-autistic/transcript.shtml

Also the father, Paul Collins, wrote a wonderful book titled "Not Even Wrong: Adventures in Autism." The mother has also written several books.

jeneva said...

I had a hard time getting through the first part of Brown's memoir because he's such a difficult and insensitive person. Ultimately, it was an interesting point of view; however, he strikes me as no champion of civil rights for disabled people. He's content to regard his son as intrinsically different and, frankly, not entirely human. Which is one reason his book is popular--it's not far off the mark of what most people think: the disabled are charity cases who should be grateful for what society is willing to give them. He's not really challenging anyone's thinking. Even with the Jean Varnier part, which just advocates a life apart for disabled people. Another thought I had while reading his memoir is how readers would have responded to his remarks had he been a mother, rather than a father? The public would have excoriated a woman for speaking as disinterestedly and in as blunt a manner as he did.

Rob Rummel-Hudson said...

Well, you and I clearly have wildly different reactions to Brown. Which, you know, is okay.

jeneva said...

Yes. Different perspectives def ok. To be clear, wasn't trying to criticize you, just share my own impressions. Liked your post. Have been here in past. First time I've left a comment, I think.

jeneva said...

Sorry--re: Brown, I meant he's popular among non-disability audience because he sees disabled the way other outsiders do. I didn't mean to criticize other people in the larger disability community (including parents) for finding things of value in it. I think there is stuff there to like. I like some of Varnier. In my long view, though, not sure I like all of it, Brown and Varnier. Hard to parse all thoughts in short space. Sorry if I offended anyone. As Elizabeth can attest, apparently this is my bitch week.

usethebrainsgodgiveyou said...

That thing about it not being up to them to prove their worth...PROFOUND, baby...

Letting go of fear is the first step. I taught one year in a profoundly mentally handicapped classroom. The parents unconditional love of their children was cool (not all had it, by the way), but even cooler were the personalities of the kids, although not one had verbal language. Most amazing year of my life.

My own son is mildly handicapped. I used to be a pity magnet. Now I know I'm lucky. Angel? Hell, no...but hooked into the slipsteam (my vision of deity) of love. when I pitied him/myself I lived in shame. Now I live in a kind of power, a wisdom.