Sunday, August 20, 2017

The Necklace That I Wear Now.

In her later years, my mother wore a simple necklace, a gold-plated fleur-de-lis through which she tied a black shoe string, every day. Etched on its surface in the tiniest of print is the name Mary King Hilsman Pettigrew, my mother's mother.  When Mom died, I inherited the necklace.  Me, the one person in the family who doesn't like to wear jewelry other than watches. I don't know why I don't like to wear jewelry. For some reason, I have had a lifelong aversion to the feel of  cool chains or pendants on my neck and on my wrists. So my mother's necklace has stayed largely hidden away since her death.

White Protestant that I am, I have also never really understood the attraction of religious medals or icons , or the invocation of one's ancestors.

Two days ago, looking for something else, I found the fleur-de-lis necklace--at the end of several months of never ending chaos and long-festering anger, frustration, and powerlessness because the quality of life where I live has been severely compromised.  This week, after they announced that my apartment needed to be treated for the fifth time for bedbugs , the stress of those months erupted into a full-blown depression , and when I found the necklace, something led me to put it on. I've been wearing it ever since , although I will put it away for safekeeping while they spray tomorrow. Otherwise the careless people who pack up my stuff and and have now done two heat treatments and sprayed my room with god-knows-what chemicals twice may well damage or lose it.

I'm still not sure what I think about religious medals, and neither my mother nor my grandmother were hugely religious.  They were certainly not saints. All I know is that I feel some almost desperate need for the strength, love,  and presence of two strong women who adored me.

Friday, June 16, 2017

Love on the Walls


A friend of mine was ordained yesterday.  Last Sunday was the twenty-eighth anniversary of my own ordination.  Pictured above is the letter my mother wrote me two months before the momentous occasion.  It's the kind of letter a daughter dreams of getting from her mother-- full of love and pride. "Number two daughter-- Number three child -- NUMBER ONE PRIESTESS!" it says.  I smile--and cry--every time I read it.

Beside Mom's letter is a quote from Shakespeare which my sister hand painted and gave to me one Christmas. . . 

     Be not afraid; the isle is full of noises, sounds and sweet airs that give delight
     and hurt not.  Sometimes a thousand twangling instruments will hum about mine
     ears; and sometime voices that, if I then had waked after long sleep, will make
     me sleep again; and then, in dreaming, the clouds methought would green and show
     riches ready to drop upon me that, when I waked, I cried to dream again.
                                                             [Caliban, The Tempest]

Leslie's reassurance in a world that often seemed--and seems--perilous to me.

Just above my ordination letter is a framed poster of a woman who looks Indian.  She is holding the sun. Its light creates a prism of color around her.  "Healing Woman" reads the caption.  My friend Margaret gave me the poster for my fiftieth birthday.  Hard to believe that was almost ten years ago.

Looking up from the poster, I see a picture of a fleur-de-lis, the symbol of the home and land in Haiti where my mother spent her childhood.  I painted that picture for her the summer I turned thirteen, during the two weeks I spent with my grandmother.  I can still see my grandmother looking over my shoulder as I painstakingly printed the Haitian words she taught me for "I love you":  "Je Vous Aime".  There is three generations of women's love for each other in that painting.

To my left as I face my mother's letter are two of her paintings of the New Mexico landscape.  "It's the only place I really want to go," I had told her when she expressed a longing for me to travel, so she and my father surprised me with a trip there in 1994.  I remember them pulling me in my wheelchair through barely accessible dirt and rocks to view ancient drawings etched in stone, or to gaze at the beauty of rock formations standing against the wide open clear blue sky.  I remember our joy at sharing that experience together.  I see again what an incredibly gifted artist my mother was.  I feel how much my parents loved me.

Behind me is a picture of late twenty something me sitting on a bench outside the common area of the seminary I went to.  My six million dollar friend Steve Austin took that picture.  Steve, if you happen to read this, you should know I've gotten more compliments on that picture than I have on anything else in my apartment.

To the right is a black and white photograph of an aged man, his body stooped to an almost ninety degree angle, standing on sun-dappled grass framed on either side by trees.  My sister took that picture; of my grandfather walking on the farm he loved.

Somewhere on that wall is a painting of a delicate lavender wild flower sandwiched between two boulders.  The artist was a friend of my mother's.  Mom bought the painting from him, and gave it to me because "It reminds me of you," she said.

There is my mother's water color rendering of a sisal plant, the plant my grandfather grew while they were in Haiti, and a picture of what looks like some deity hovering over an island in the ocean.  "The Goddess watching over you," said Mom as I opened her birthday present.

Last but not least, there is the silver-framed picture of the five of us--my sister, me, my  brother, my mother, and my father, taken on Mom's ninetieth birthday--the last time we were all together.

These are the pictures which surround me every night and greet me every morning. The love which emanates from them cradles me as I sleep and supports me as I move through my day.  And it is that love which my ordination calls me to share with the world.

Friday, February 17, 2017

The Genie is Out of the Bottle

"Bodies of Work ", said the reminder that popped up on my cell phone.  I'd put the event on my calendar weeks before the election--  a night of "disability culture ",  artistic expression by and about people with disabilities.   At the time, it seemed like a good excuse to get out of my apartment.  Now, it was as necessary as oxygen.
There were readings from original works-- plays and essays, humorous and reflective.  Good enough, but not particularly memorable.
Some guy walked onto the stage carrying a potted plant.  He threw it on the floor, picked it up, and threw it again, shattering the pot and spilling its contents.   He pulled a roll of masking tape from a plastic bag, fit the pieces of the pot back together like some sort of jigsaw puzzle, and re-potted the plant.  His representation of life with a mental illness.
  Definitely memorable.
But it's the dancers who made the biggest impression on me.  Three women.  I recognized the first.  She use to live in my building.  Tall and thin, with jet black hair, coffee colored skin, and thick red painted lips.  I thought  of a Frida Kahlo self-portrait.  Her body leaned on a sparkling silver cane.  Carefully she turned toward us, shifted her weight, balanced, and lifted the cane in the air, thrusting it with defiant pride.  Bearing a look which dared anyone to question her, she turned again, cane still held high, and marched around the room.  The second woman followed.  What she did escapes me.  The third, however.  .  .
She came in five minutes after the others.  Left crutch, right foot ; right crutch, left foot.  I knew that walk.  The same walk I began learning when I was three years old.  I knew the curve of her back too.  I' d seen it in a picture of me in my twenties standing looking at my mother.  This woman' s skin was dark black though .  Her hot pink shorts stretched tightly around her stomach and thighs.  She wore a flowered bikini top.  I envied her self-assurance.  I would never have been caught dead in that outfit.  Not in my twenties, and certainly not now.  Crutch / foot;  crutch / foot,  she turned, until her back was directly in front of us.  Planting her crutches firmly in front of her body, she leaned all her weight on them.  .  . and wiggled her hot pink butt in our faces. The genie is out,  I thought .  The genie is out of the bottle.  You can refuse to enforce legislation.  You can dilute it 'til it's meaningless.  You can even make fun of the way we move and speak.  But as long as our pride lives deep within our bodies, as long as our pride stirs and moves our bodies, the genie is out of the bottle. No matter how hard you try, no matter what you do, the genie is out of the bottle.   And you can never put it back.

Wednesday, February 1, 2017

Calling on the Ancestors

My mother was in her early 40's during the Cuban Missile Crisis.  Having three children ages four, five, and almost seven , she piled stacks of National Geographic's onto our basement floor so that if we needed to survive there for any length of time, she would at least be able to educate us. Decades later, she told me that during that time she also tried to teach us to recognize trees by the shapes of their shadows, so that if we were ever imprisoned and unable to look out of a window, the shadow of a tree could help us preserve our sanity. When I was a teenager and some idiot legislators try to dilute the impact of the 1973 Rehabilitation Act, she found me in the bathroom crying."Martian Luther King didn't cry", she said.  "He got to work fighting."

My maternal grandmother was born and raised in Georgia. She did not leave the state until she was in her early 20' s, the year the Navy sent my grandfather to live in Haiti. My grandparents also had three children. My mother was two, my aunt was one, and my uncle, if he was even born yet, was an infant. Left largely to her own devices, my grandmother, who did not complete college, ordered the curriculum with which she educated each of her children so that they successfully passed tests and met state requirements every year until the curriculum ended and they left Haiti in order to enter High School.

My great-grandmother Minnie was a widow.  She was a single parent long before anyone ever acknowledged there were such people. She had three daughters. When her husband died, she renamed her youngest daughter Albert, after him. Once when she saw a bill collector coming down the road to her house, she brushed her hair, smoothed her apron, put a smile on her face, and went to the door to meet him with dignity and grace.

My father's stepmother, Mildred, the woman I knew as Grandma, watched the father she cherished die when he stepped in front of an oncoming car to save the life of his profoundly intellectually disabled wife, my grandmother's mother.  Seventeen-year-old year old Mildred instantly became responsible for raising her two younger siblings, both of whom she eventually put through college. Mildred grew to become a woman who insisted that her grandchildren move through life with class, manners, and decorum. I don't think I fully appreciated that until recently.

Helen Gilchrist, whom we called Jingle, was a close family friend. I don't remember a word she ever said to me.  But I remember her black dresses and pillbox hats; her angular face, her firmly set jaw, the worn wood on the top of her cane, and the white-knuckled death grip with which her hand held it-- a grip I know only too well. I remember the occasional streaks of gray on her artificial leg. Like wrinkles in flesh, they told me she had lived, and endured much. And I remember that she drove a car.  In the early sixties. When people with disabilities didn't do such things. To my four or five year old self, she was an image of strength. Of the strong woman I could become.

Helen Keller was the child I got sick of.  Who people constantly talked about--The  pathetic, inspirational, "handicapped"  child whom Annie Sullivan turned into a human being. The child who "overcame" her disability like I was supposed to overcome mine.  Today I know that she became so much more:  An advocate for people with disabilities.  A suffragette. A radical socialist, and a founding member of the ACLU. I didn't like her then, but I'm claiming her now.

These are the women who have nurtured me. They made me who I am. They survived dark and difficult times.  And because they did, at least one child was able to survive and thrive.  By blood or by circumstance, they are my ancestors. And I am calling on them now--To hold and inspire me; to breathe through and empower me.  So that at least one child alive today can survive and thrive into tomorrow .

Tuesday, November 29, 2016

In Your Face Donald!

I did it.  It took seventeen days, but I finally did it.  I watched the news.  I haven't been able to do that since the election.  Fifteen hours of Rachel Maddow, ten broadcasts of The PBS Newshour, and an assortment of NBC Nightly News, Meet the Press, and Charlie Rose shows piled up on my DVR before I decided that maybe I could listen to some part of it without recoiling into a paralysis of horror.  So I watched Rachel's interview with Elizabeth Warren and PBS's remembrances of Gwen Ifill.   Who would have thought watching the news could require courage?

I tried to do it a few nights after the election.  Maybe I can tolerate news with a comedy chaser, I thought, or a sort of news / comedy stew.  I turned on The Daily Show.  Sitting beside Trevor Noah was a female comedian.  She did her comedy bit, then referred to one of the last lines of Hillary Clinton's concession speech, the one where Clinton exhorted women and girls to never forget they were strong, beautiful, and capable of doing anything.  "The fact that we have to be reminded of that now. . ." said the woman on The Daily Show, bursting into tears.  The next segment included a Muslim staff member, who told his jokes, and then talked about his mother.  "She's out of the country visiting my grandmother," he said.  "She called me the other day wondering if she'll be able to get back into this country when she's scheduled to return in February, and I couldn't tell her, 'Yes, of course.'"  He too burst into tears.  Later I watched part of Stephen Colbert.  I felt some relief as he showed a picture of Trump sitting calmly beside President Obama in the White House.  That in itself was disturbing--that a picture of Trump appearing -- even appearing-- to be civil is now all it takes to make me feel relieved.  Then the image of Trump making fun of a disabled reporter flashed through my mind, and any relief I had felt vanished.

Years ago, a friend painted my portrait.  Before she began, I asked her not to show my "deformed" left hand. 
Months ago, another friend interviewed me about having a disability for a project he was working on.  His friend who is a photographer took several pictures of me to go with the recording  of  our conversation.  I hated most of them.  It was all too clear that I have cerebral palsy and very bad scoliosis.  I chose a head shot precisely because it hid my disability, even though I had just talked--very openly --about that disability.  I'm not proud that I am so embarrassed about my body.  My feelings defy everything I try to teach others about how they should treat me; about how they should treat anyone who has a disability.  But it's true.  I am embarrassed about my body.  Even while it is also true that I don't believe I should be, and while I also know at some very real level that different is not ugly or bad.

Decades ago, someone else with a disability called me a "crip".  "I can do that," he said, "because I'm a crip too."  I practically bit his head off.  "No, you can't!" I told him.  "I don't care who you are.  Don't ever call me that.  My name is Mary."

I'm rethinking all of that now.  Or maybe the better word is re-feeling it. "Cripple" or "crip" is still my least favorite word in the English language, and it's still not ok for anyone, disabled or not, to call me that.   Anyone that is, except possibly. . .  me.

In my effort to steel my soul against the poison which spewed from Donald Trump about people like me, I re-read an essay by one of my favorite authors, Nancy Mairs.  Mairs is a woman of faith who thinks deeply.  She use to write a column I loved for The Christian Century.  She is a feminist who writes in support of other women writers.  She has a wicked sense of humor.  She is also a woman with a disability.  She has multiple sclerosis, and she writes about that with humor, grace, and gut-level honesty.  One of her best known essays is titled On Being a Cripple, in which she writes, "People--crippled or not--wince at the word 'cripple'. . . .  Perhaps I want them to wince. . . . As a cripple, I swagger."

In the spirit of Nancy Mairs, so help me God, one day I will plant my decidedly S-shaped body in my power chair, floor it until I am parked directly, dangerously, and unavoidably in front of Donald Trump's toes, raise my fist-curled , "deformed" hand into the air, and shout at the top of my lungs:



Sunday, November 13, 2016

Cardinals Come in the Winter

A very nice woman came into my life recently.  She helped me de-clutter my apartment and reorganize the stuff I chose to keep.  A professional, she surveyed my space at our first meeting and quickly assessed what was important to me.  Among my most important possessions, she judged correctly, were things my mother gave me.  On the day of her last visit, the woman who was helping me unearthed a handmade wooden cardinal from a box in the back of my closet, and held it out to me. 
"My mother gave that to me," I said, indicating I wanted to keep it.
"Ok, that's beginning to be not enough reason to keep things, " she replied, adding, "We're running out of room."
It was an uncharacteristic response, and it felt like a punch in the stomach.  "You can put it on the top shelf there," I insisted.  She scanned the shelf I pointed to, noting the things it already contained.
"That doesn't work for me," she responded.
"It works for me," I said.
Later that night, I thought about why that wooden cardinal is so important to me.

Outside the kitchen window of the house where I grew up, my mother hung a bird feeder every winter.  She faithfully kept it filled so she could watch the birds come and go from its perch.  One afternoon as I sat at the kitchen table, I happened to glance out the window.   I was awestruck.  There at the bird feeder, in stark contrast to the gray sky and snow covered ground, was a brilliant red cardinal.  I shared my sense of wonder with my mother.  Neither of us mentioned that moment again.  The following Christmas, which was about a year later, I looked at my very full stocking as I came downstairs.  Pushing its way out of the top of the knitted material was a handmade wooden red cardinal.  My mother said not a word, but I knew--It was a bond between us forever.

This was suppose to be a reflection on the stories we miss--on the clues we fail to pick up and the stories we never hear because we are tired or harassed or too preoccupied to listen.  It would have been good to think about that.  But this past week has changed the contours of my mind in huge ways, as it has changed the contours of so much else in the world.  Now this is just about something I learned from my mother:  Cardinals come in the winter.  I need to spread the seeds which will eventually entice them to come.

Sunday, October 9, 2016

Kingdom Moments-- Being Seen

It was a kingdom moment people!  Another kingdom moment!  Lying in bed watching the first episode of Speechless, the new ABC comedy which centers around the life of. . .wait for it. . . a person with a disability!   I didn't know what to expect when I heard about its impending debut.  Actually, what I expected was some able-bodied person pretending to have a disability, and lots of stupid jokes which fed stereotypes.  I've learned to set the bar low when it comes to media's depiction of people like me.

My mouth dropped open the  minute I saw Micah Fowler's character, JJ, as he drove onto the lift of his family's specially equipped van in his power chair.  This was no "acceptable", virtually able bodied crip, and there was my chair on TV!   Not in some sappy news story about some trauma victim going through rehab, but in a show about a teenager who also happens to have a disability simply living his--and much of my--life!  What a concept!  I looked again at the guy in the chair and thought, My God!  I think he actually has a disability! (He does.  I looked it up.)  And I think it's cp!! (It is.  I looked that up too.)  Do you know how radical that is?--that they hired a real live person with a disability to play a person with a disability??!!  Activists have been fighting for years to get Hollywood to do that.  Again, what a concept! 

And then. . . And then. . . And then. . .!!  JJ and his mother confront some apparently able bodied woman using a handicapped parking space--another vignette from my life-- and as JJ, who cannot speak, gestures toward her with his thumb, his mother translates, "That's the finger."  Now I know, it's not normally a very Christian let alone ministerial thing to celebrate someone giving someone the finger, but when you've heard the message over and over for most of your life that because the world has to put up with you and endure your disability you have to be angelic in every other way, seeing a positive portrayal  of someone with a disability giving someone the finger is liberating. ("Positive " meaning this is not some newly disabled person who supposedly needs to "adjust" to his disability and not be angry anymore).  Trust me, it really is a kingdom moment, a moment in space and time when heaven meets earth.  Not heaven as in a place where I'm suddenly "cured" of cerebral palsy, but heaven as in a moment when my world is seen from my perspective, and that perspective is validated; where I am / we are treated with dignity, where there is humor and anger, and that anger is seen  as a mark of strength, not something we should "get over". For thirty minutes, I watched the complexity of life with and feelings about having a disability acknowledged.  For thirty minutes, I saw my life, my self,  defined as  a legitimate part of that wide and diverse spectrum called normal.  "YES!!" I shouted several times, halfway between tears and laughter, pumping my fist in the air. And when JJ's mother got pissed off because the ramp her son was suppose to use was the same ramp used for the garbage; when she answered that all-too-real expectation with the demonstration, "This is garbage [lifting  a piece of trash from a dumpster]. . . This is a person [pointing to one of the people around her]. . . My son is not garbage," I really did cry.

There must be something in the air.   Because there was another moment, this past summer:

When Anastasia Somoza began her speech to the Democratic National Convention, I wasn't watching.  Only after my sister called did I turn on the TV.  And then, I stared at her.  I took her in:   An attractive young woman.  The chair she sat in, the stiffness of her body; the tension in her voice and the pattern of her pauses for breath,  they were all  familiar marks of cerebral palsy.  "Hillary Clinton sees me," she said.  A simple sentence, yet one that conveyed some awe inspiring realities:  The reality of being seen; not hidden, as so many people with disabilities before her had been hidden --behind closed doors in homes and institutions.  The reality of being seen as who she was-- Not some poor, pitiful creature, but a strong, capable, beautiful young woman--who was all those things with her clearly visible disability; not because she looked like she didn't have one.  

I might have dismissed her presence as mere tokenism, the requisite presence of a person with a disability to strengthen Clinton's credentials as a progressive.  Politics being what it is, there was undoubtedly some element of that.  But in her speech Somoza said she met Hillary Clinton when she was nine and Clinton was First Lady.  The two of them have stayed in contact since than, and Clinton has encouraged Anastasia's professional development. Two other people with disabilities spoke at the convention, and indicated Clinton had also been in contact with and advocated for them over many years.  Then there was this story during the presentation of Clinton's biography--At some point before she was anybody famous, she encountered a person with a disability who had been denied access to an education.  Clinton's response was not, "Oh you poor dear!".  It was advocacy.  She worked through legal  channels to help insure that not only the person she encountered but other people with disabilities could get the education we deserve.  All of this--the years of maintaining contact and the long-term commitment to advocacy--suggested to me that whatever else was going on here, whatever else explained the visibility of people with disabilities at a national convention, it was more than mere tokenism.  And to witness it, to witness the affirmation on this stage that we are not objects of charity but people who have rights; to witness the affirmation of our strength and capabilities  in a context where I had never seen that affirmation before, was breathtaking.  It made me feel seen.

I am significantly older than Anastasia Somoza and Micah Fowler.  Somewhere in my years of growing up, I got the message that one of the primary purposes of all the therapy I went through was to make me look "normal," and  normal meant not having a disability.  Because the more normal I looked, the more society would accept me.  The less disabled I looked, the more opportunities I would have.  It is difficult to describe the impact of seeing people with bodies like mine affirmed not only by a segment of the disability community, but in  the national media.  How do you describe the impact of being seen?  I can't even say that those moments have had concrete results.  They have not minimized the literal pain and physical struggle of living with an aging body which has cerebral palsy.  They haven't lessened the frustration or made me fall in love with my body.  But I know that in some real if ineffable way, those moments changed me.  Because I saw myself in a place I had never seen myself before, being depicted in a way the media has never depicted people like me before.  And being seen is profoundly healing, even if you can't exactly say how.