Tuesday, June 14, 2011

THE R WORD

DISCARDED CRUTCHES IN THE SANCTUARIO IN CHIMAYÓ, NEW MEXICO
photo: Dustin McClaws

From a recent exchange with Betsy Cullerton, a NYC lawyer with severe birth defects. Betsy underwent four major surgeries as a child and has been in a wheelchair all her life.  

Hi Heather,

I spent some time in Michigan over the weekend. My parents have several acres on the lake, and I haven’t worn out my welcome. My mother is a wonderful gardener, and with all of the rain across the Midwest spring has exploded. I was out in the driveway, listening to the frongsong gurgle and belch in the ditches and gulley. A flock of birds rested in the tree above me. The lake, sequined and shining gave the impression of something solid; I longed to walk across it. For a moment I believed I could. Looking out over such an expanse, I felt such a deep desire and longing to return. I prayed over the feeling, and I realized that it was a longing for God. The world is gorgeous and life pure gift. The world is not my home; my joy is veined, riven with exile

I was very lonely as a child. While my cousins were down at the beach, I would be off in a wooded area, or reading. Thank God for books. They have comforted me through many long afternoons. The loneliness was painful and uncomfortable. Like a hairshirt. But I have grown used to the mortification. There is a mysterious solace in it I know to be God. But I must accept being strange to others. 
I know that many consider my life to be one of sorrow and limitation. This is particularly true in America where illness and frailty have become taboo and rude. I often feel uncouth, like a dinner guest picking my teeth at the table. Don’t I have enough good manners not be sick? And if I can’t be well, can’t I at least have the decency to hide at home or in an institution? But there are moments of inexpressible sweetness and joy that bloom in the dessert. I don’t know what grass feels like against my feet. I’d like to think that in heaven I will be able to roll in it with the dogs. But I do know the Braille of the land-its bumps, slopes, and curves. We have grown so afraid of pain, suffering, and sorrow we’ve forgotten the laughter in tears, the joy in sorrow and the comfort in pain

I just read your post on the burdens of love and the burden of books. I had to laugh. I once felt as you did. But now that I have a kindle, I love it. My hands and wrists no longer tremble with fatigue as I read. And it is easier than ever for me to be lifted up and away through literature. My father loved to read. From him, I inherited my ravenous appetite. While I was recovering from surgery, he gave me an illustrated copy of Anne of Green Gables. The story gave me so much joy. And dear Anne! So much happiness after such terrible affliction. She taught me so many lessons. Then there was Narnia and The Velveteen Rabbit, stories that filled in the Gospel for me. Later I borrowed from my brother’s collection. He introduced me to Tolkien, Herbert, LeGuin, Edward O’Brien, and early Steven King. He did not hoard his books; we passed them freely back and forth. They were exceptions to a fierce privacy we both respected

The burdens of love are much more difficult. I’ve hired many caregivers throughout my life. I tell them the job requirements, travel and pay. They begin with enthusiasm, but often it wanes. Caregiving may be a job, but it requires a  lot of love and tolerance. Tolerance of my frailty, tolerance of weakness. We negotiate and compromise. With some the love has frayed and broken within a month. With others it has been renewed daily. When they would quit, I would take it terribly personal, as though I was a burden. But that’s a sort of denigrating narcissism to which I am prone. My weakness gives others an opportunity to love. If they choose not to accept it then they are not required to do so. Each day I have the opportunity to love others in their weakness as well.

It is my great regret that I cannot perform corporal acts of mercy-helping a friend move, driving my mom to the doctor, or changing a niece’s diaper. When I feel this way I often think of Martha and Mary before the Lord. Martha is busy cooking and cleaning, consumed with the physicality of hosting. Mary sits in quiet dreamy contemplation. My acts of mercy must be spiritual in nature-consoling, listening, praying and writing. Secret acts. Little acts.

CHRIST HEALING THE PARALYTIC,
BYZANTINE 
Hi Betsy,

As always, your insights are about three levels deeper than the world's, or mine, so I thank you for them. "We have grown so afraid of pain, suffering, and sorrow we’ve forgotten the laughter in tears, the joy in sorrow and the comfort in pain"...You know, this is the whole heart of Christianity, that we are called to joy, and that the joy is available even in the midst of sorrow and pain, and in fact, our joy is not COMPLETE without sorrow and pain. To love Christ is to see and experience the world in a certain way, a new way, a way that is totally different than the way of the world. And as he said, it drives a sword between people! We are so afraid of pain we don't know what to do with it, we hide it away, we avert our eyes. We have no sense of liveliness or playfulness or getting our hands dirty, of looking pain in the eyes.

Someone, I'm sure a very dear woman, just took me to task for mentioning on my blog that my beloved friend Lisa G. and I had had a little spat this week that we had VERY MATURELY resolved because, as Lisa said, to stay mad would have been retarded, and of course the woman had a developmentally disabled or whatever the politically correct term is son, and is part of a campaign to wipe the word "retarded" out of any thinking person's vocabulary. And because I felt this woman's wounded heart was more important at the moment than my "right," which I dearly wanted to argue for, to use a perfectly good word that means slow, for heaven's sake, and is therefore beautifully descriptive and even poetic, I apologized and took the passage down without making a federal case out of it...


From Betsy, a few days later:

I am very familiar with those types of speech codes. When I first came to
Chicago I wanted to work with Access Living, a nationally recognized Center for Independent living. While I appreciate the work that they do, some of it was deeply overwrought, a reflexive outrage had replaced genuine human emotion. Take for example, the Jerry Lewis Telethon, a favorite target of advocates for many years. Did the telethon promote pity? Of course. But pity acknowledges the pain of another, something the advocates cannot stand. In a valiant effort to show our humanity, they simply whitewash pain and disfigurement, and present a super-competent portrait that is as fictive as the one they tried to replace.
            
I work in City Hall. I see many people struggling in walkers, or ill-fitting obsolete wheelchairs. Perhaps the walker is their choice, an effort to retain independence. Their steps are so deliberative and labored, that I have to believe their lack of equipment was forced on them rather than chosen. My heart is moved to pity, because I know how much it hurts to not have what you need. Depending on who you speak to, the preferred term for people with disabilities is people with special needs. This phrase is the linguistic equivalent of pine air freshener in a taxicab. If I really wanted to convey the pain, sorrow, and humiliation of my body, the word cripple captures it perfectly. Along with “retarded,” "cripple" has been thrown in the politically correct trash-heap.
            
Where I most diverge with the advocates is in their belief that if every doorway were widened, every curb leveled, every toilet raised, every caregiver fully funded, the pain and alienation of my condition would be greatly lessened and I would be able to pursue my dreams fully in society While that would be wonderful, no law, no government, no politician can soothe my inflamed and wounded heart. Even of the world were perfect, I would still have a fallen and broken heart. That brokenness is what we can no longer face. We cover it up with speech codes and sensitivity training. An institutionalized culture of grievance has stripped us of the words I’m sorry and You’re forgiven

Instead there are reports, protocols, and reprimands. Try not to censor yourself. Your words will fall like hailstones to some, petals to others.




12 comments:

  1. Several years ago I heard a segment of Fresh Air where Terri Gross was interviewing a man who had grown up with a club foot. He kept referring to himself as a cripple. She was somewhat disconcerted and finally asked him why he kept using that word. "Because I AM a cripple," he replied. It was somehow refreshing to hear him say that.

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  2. Thank you Betsy. I have had such trouble working my mouth around the cumbersome whitewashing of painful truths. I grew up with the words 'cripple' and 'retarded', but used appropriately and respectfully. It seems that, as disrespectful behavior has become tolerated, inappropriate use of those words to insult the non-afflicted became popular. Instead of stopping their inappropriate use the pendulum swung, as it will, and these perfectly good words were banished from civilized conversation.
    As medical research provides a greater understanding of physical conditions and descriptions such as 'autism', 'Parkinsons', 'cerebral palsy' enter the vernacular, I find my need for generic terms, such as the one's mentioned, lessening as I try to be more accurate in my descriptions. I don't know what happens next, whether those words will ever be OK to use again, but your willingness to share your special insight is a gift of considerable value. I pray that you receive the same respect and understanding you so generously offer others.

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  3. I am not offended by the word retard or retarded. My 19 year old daughter, Kathryn, is retarded. She has an additional diagnosis of cerebral palsy but her body interferes less with her progress than her cognitive impairment. Education professionals often want to tag her as "developmentally delayed" and look at me as if I am insensitive when I use the words "severe mental retardation". My daughter cannot read or write. She counts to 6 out loud but cannot count out 6 items. The use of the word "delay" implies catching up. At some point the train that is delayed will arrive and take you to where you have been waiting to go. For Kathryn, that train is not coming. She is slow and there will be no increase in speed as time moves forward. What we use as shorthand to label a particular set of limitations is far less important than that we treat those with these limitations with dignity.
    Betsy, thank you for your insights and Heather, thank you for your honesty and humility. May God bless you both.

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  4. Just the other day I was thinking of the movie, "The Best Years of Our Lives." In it was a man who lost one arm in WWII. The characters approached him with a commingling of pity and compassion. Rarely do we see this today in our daily lives. The disabled are either ignored altogether or their special need is. And by doing that, we fail to be open to the reality present in front of us. Betsy has edified me with this exchange.

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  5. Dear Heather,

    One of the lovely problems of the blogging world is that dedicated readers eventually come to believe that they know the author. After all, you have shared your thoughts, your reactions, your worst moments, and your best self. But in opening up any conversation around a topic, you do not know or think of the combox respondents as friends in the same way as those with whom you’ve conversed with over time. (The idea of inviting the stranger to come sit at your table and eat, yes!)
    I am not a gifted enough writer to succinctly state all the reasons why I reacted the way I did in response to your friend Lisa’s comment “…to stay mad would have been retarded”. And I don’t have time to write at length about all my musings over the topic. I have spent way too many hours in this lifetime discussing and arguing about the language of disability. I am sick to death of the constantly changing PC world that disallows the existence of the imperfect by changing the names of conditions, and the constant change, in my mind, means constant denial of the suffering, the isolation, the loss, all of those things.
    Betsy so eloquently wrote:
    "I am very familiar with those types of speech codes. When I first came to Chicago I wanted to work with Access Living, a nationally recognized Center for Independent living. While I appreciate the work that they do, some of it was deeply overwrought, a reflexive outrage had replaced genuine human emotion. Take for example, the Jerry Lewis Telethon, a favorite target of advocates for many years. Did the telethon promote pity? Of course. But pity acknowledges the pain of another, something the advocates cannot stand. In a valiant effort to show our humanity, they simply whitewash pain and disfigurement, and present a super-competent portrait that is as fictive as the one they tried to replace."
    This has been my experience, exactly. So why, then, did I protest your use of “retarded”? I have no problem with the definition of “mental retardation” or using it to describe someone who is. What I object to is the use of the word “retard” or “retarded” as an insult. Its frequent use in popular culture has grown in mean-spiritedness during a time when more people with disabilities are visible than probably at any time in history.
    “Anonymous” (#1) wrote what I should have said to you the first time around (and in just two sentences at that!):
    "It seems that, as disrespectful behavior has become tolerated, inappropriate use of those words to insult the non-afflicted became popular. Instead of stopping their inappropriate use the pendulum swung, as it will, and these perfectly good words were banished from civilized conversation."
    What mattered to me in the end is that what you did for me, a stranger you do not know. You cared about not hurting me, and responded in love, to a stranger. Is that censorship or thoughtful editing? Or acting in Christlike love? And to top it off, you introduced us to Betsy. So, in my book, this conversation has been all to the good, and worthy of your time and effort to dig deeper with your readers.

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  6. Mid-morning reading (Terce) 1 Corinthians 13:4-7

    Love is always patient and kind; it is never jealous; love is never boastful or conceited; it is never rude or selfish; it does not take offence, and is not resentful. Love takes no pleasure in other people’s sins but delights in the truth; it is always ready to excuse, to trust, to hope, and to endure whatever comes.

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  7. Ms. King, My daughter lives in LA and I live in Texas. I read your blog with gusto as it helps me overcome my aversion to the city that seems to have swallowed my child whole. I've only visited there once in the three years she has been there and the only solace I found from the hustle was in Our Lady of the Angels Catholic Church. (I, too, am a recent convert.) Little by little, however, the flora your photos have afforded glimpses of have softened my heart to LA. Today's pic of Chimayo also brings back happy memories of a 30-year past visit there. Thank you for your insights.

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  8. What a wonderful post. Thank you and God bless Betsy and you.

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  9. My Mom become an above-the-knee left leg amputee in her fifties. She went to a vocational school that trained disabled people(all disabilities)to get back into the work place. She worked for 14 years. Nothing stopped her.

    One day while she was going on her 2nd trip to visit friends in Austria, the belt which held up her leg broke as she was getting into the car to take her to the airport. She told the doorman to turn around; while I sputtered, “MOM, MOM‼‼” She calmly handed me the leg and off she went.

    I wish I had 1/4 of her courage.

    I also have a cousin who will be three years old next month and hewas born with Down’s Syndrome. He is a bright little boy who will be
    attending day-care in the fall.

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  10. Such tenderness, such roominess, such understanding that there’s no right way and wrong way here, but a question. Thank you all, and of course I’m especially glad to hear from you, Mary Beth.

    This transcript of a recent talk by Msgr. Lorenzo Albacete seems somehow connected. He writes:

    “The unifying principle [of the word of God] is the gestalt of Jesus Christ…[G]estalt means more than just a figure; it’s like the weight—you see the Johannine words we use—the glory, the power of presence, the characteristics; your gestalt is you, but it includes things like do early morning noises bother you, or not? And if you find out, I know people very well for whom early morning noises define the whole day, and it characterizes everything for the rest of the day. My brother is like that, so I spend the night praying for a quiet morning because I know it will take up our whole day. It’s as ridiculously ordinary as that. The gestalt is the shape of the personality, taste….; it’s not just the figure; it’s not just an image; it is a powerful presence. I like to use the words glory and light and weight. These are Johannine terms.”

    The problem with trying to legislate language is that the gestalt of both the person talking and the person or people putatively getting talked about is lost. Msgr. Albacete for many years has taken care of a brother who, I don’t know the details, but let’s say has difficulties. And just this one detail, that the brother is bothered by morning noises and so whether there are morning noises or not dictate the day, is some kind of glory, makes us love him somehow. Behold the man. The human being not as a means to an end but an end in him or herself, with all a human being’s idiosyncrasies, maddening habits, conflicting opinions and urges, weird, random bursts of generosity and love. In the effort to legislate language I’m shamed for using a word I’ve used all my life and for which no adequate substitute exists. I’m asked to make a connection that seems to me absurd. And worst of all, the developmentally disabled son gets lost. Do morning noises bother him? What does he eat for breakfast?

    Also lost in the shuffle from my p.o.v. was that I had had a spat with my beloved friend and that we had made up. A human relationship had been torn asunder and then mended. My initial fear and hurt, my joy that things had been put right again, my delight-affection-amusement at the way rudimentary maturity works alongside perpetual adolescence in my own relationships and those of most of my dearest friends…all that went into the remark. And that in a way is my gestalt. I don’t mean you just go around saying hurtful things and acting like a jackass and saying “Sorry, that’s my gestalt!” I’m saying that all the glory of my friendship with Lisa G.—the lively sense of poking fun, that she’s Jewish and had given me an ancient Sacred Heart badge—gets overlooked when the focus is shifted to my characterization of the spat as “retarded.”

    To be always teachable, always willing to be corrected; and also to know that we’re not responsible for making people happy or always doing what they need is a delicate balancing act.

    Still, just as the Eucharist trumps everything, so, pretty much, does the wounded heart of a mother who is caring for a developmentally disabled son. For years I carried around a dog-eared printout of the Litany of Humility by Merry Cardinal del Val:

    From the desire of being approved, Deliver me, O Jesus.
    From the fear of being humiliated, Deliver me, O Jesus.
    From the fear of suffering rebukes, Deliver me, O Jesus….

    At the top I’d hand-written some thoughts on humility from Mother Teresa, one of which was something like “Don’t stand on principle.” And that is what guided me here. When someone is in pain and asks you to refrain from doing something, you can make your point about your principle later, if at all. I’m still working on the “if at all” part…

    Betsy was going to send us a photo of herself but got shy. I thank her, and all of you, for lighting the way once again...

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  11. Please encourage your friend Betsy to write if she does not already do so. She has an amazing gift of self expression.

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  12. In the effort to legislate language I’m shamed for using a word I’ve used all my life and for which no adequate substitute exists.

    Exactly! You could have said that the spat was "stupid", "immature", "ridiculous", etc. Any would have served, but none would have been adequate. The word that you chose was perfect, and when I read it, the absolute furthest thing from my mind was an actual person with a disability. Yet in the end, you put the care of a person over the defense of a principle, and that was a beautiful thing.

    David

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