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. 
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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:

IN YOUR FACE DONALD!

CRIPPLE???     DAMN RIGHT!     DEAL WITH IT!

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.

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.

To Life! --Especially Mine

"She gave me life and I'm hell on wheels!"

I read that somewhere in college.  I have no idea who said it but. . .

SHE DID and I AM and THANKS BE TO GOD for every single one of the people who have made this an amazing, love-filled and joyful journey !

[I would have added "challenging", but with all due respect, I could have done without one or two of those!]

 

 

My First Priest

             

 

When I was five, I began to live at a rehab center.  My parents sent me there, because the best doctor in the country for the treatment of my disability told them to, so I could learn basic life skills—skills like walking and dressing myself; skills that come naturally to kids, unless they have cerebral palsy.  Physically, it was the best.   Taught me everything I know.   Emotionally, it was hell.  Felt like complete separation from love, from any sense that I was special, that I mattered.  Except in the most generic sense.  As in, If we don’t keep her healthy, there will be hell to pay. We will get in trouble.  I’m not even sure they would have.  It was 1963.  There was less oversight of such places than there is now.  Who cared what happened to a bunch of crippled kids?  I stayed there for five years, only seeing my family every 3 months for two weeks.  The experience remains my definition of hell to this day.

 

Into this pitch black abyss, God dropped 3 things:  Chocolate pudding, rubber animals, and an Episcopal priest.  Well, the first two of those things didn’t really drop in.  They sort of came with me—The love of chocolate pudding if not the actual item, and my collection of rubber animals.  I put them in the very large pockets which the grandmother who adored me sewed to the countless big buttoned dresses she made for me.  Big buttons specifically for hands which had not yet developed fine motor coordination.  Big pockets specifically for my rubber animals—So they could accompany me while my hands gripped two crutches and I walked through the halls.  But the priest?  He did drop in.  One Saturday a month.

 

Some staff member took Babby, David, and me to an empty classroom where we met with him.  Babby was a girl my age.  David was a teenager. He had been confirmed. The priest gave him a wafer.  Babby and I hadn’t been confirmed, but the priest gave us a wafer too.  I knew he was breaking the rules, and that made me smile.  Once, the priest told me that anyone named Mary was named after the mother of Jesus.  I thought I was hot stuff after that.  Not much made me feel like hot stuff back then.

 

The priest is probably dead now, but I need to write him a letter.

 

 

Dear Mr. priest,

 

That five-year-old girl you gave a wafer to grew up to become a priest herself, although the denomination she chose doesn’t call ordained people that.  When she went to college, she learned that Jesus cared especially about “marginalized” people; that God had a “preferential option for the oppressed.”  Some of the books she read in seminary said that too.  And now the people where she goes to church remind her of that every week.  But you were the first person who showed her that.  Because you gave her a wafer.

 

She teaches a Bible study at the place where she lives now.  Sometimes she wonders if it makes any difference.  There seems so little she can do to make the people feel loved; like they matter. 

 

I wonder if you felt that way—when you left those sad faces—on all those Saturdays.

 

And on that Sunday afternoon in June of 1989, I hope you were part of the congregation.  I hope Jesus gave you a front row seat.  I hope he leaned over and whispered in your ear,

 

“Remember when she was five and you gave her a wafer? 

 This day began at that moment.”

 

An Embarrassment of Riches

Paratransit screwed with me again.  It seems to be what they do best.  Usually, that means they pick me up at least an hour late.  But I can't be more than five minutes late getting to them, otherwise they'll leave me.  A month or so ago, they were 2 hours late.  When I called to find out what was going on, the phone rang for 45 minutes before anyone even answered.  It does no good to complain to the powers that be.  They just give you excuses.  This year, I'm up for recertification.  Could someone please tell me why an almost 58-year-old woman with a congenital permanent disability and assorted other significant limitations that have come with aging needs to be recertified as disabled enough to need paratransit?  Do they think that riding around in their vans for hours is so much fun I would use them if I didn't have to?  And yet, I'm terrified they won't recertify me.  Because if they don't, I have no other way to get to church, to doctors, or anywhere else in this city.  That they have so much power over my life drives me crazy. Today they found another way to screw with me.  When I called for a ride to church tomorrow and told them I needed to be there at 10:00, they told me the latest available pick-up time was 7:45.  "I'll call back later," I said.  When I called back later, they said the latest available time was 7:26.  "I'll call back later," I said again.  I didn't call back later.  At least, not for the same ride.  Remembering that I recently went to an evening prayer service at an Episcopal church a lot closer to my house, I called for a ride to that church-- and got a pick-up time at a reasonably sane hour.

I grew up in the Episcopal church.  As a teenager, it bored me.  I don't talk to God this way, I said to myself one Sunday when I was thirteen.  The words from The Book of Common Prayer came out in a monotone-- from me, from the congregation, from the priest.  We said the same prayers every week.  All the "thees" and "thous" seemed pretentious.  As a young adult, I chose to join the Christian Church (Disciples of Christ).  Their liturgy was more free form.  I could write my own prayers.  I still love that about "my church,"  the church which has loved me long and best, long and best enough that it is the church through which I decided to become ordained.  I consider it my home. Last week, I wrote and delivered the Call to Worship at my home congregation.  I wouldn't trade that opportunity for anything.

But lately I also find myself drawn to the Episcopal Church.  I've started reciting its Daily Office.  I like the rhythm of repetition; of prayer throughout the day.  I like discovering that imperfect [read "sexist"] language can still nurture me. If that's true, maybe I really can nurture other people without being perfect.   It's also kind of restful to recite words without thinking about them so much.  I wonder how that will shape me?  What will happen when I simply allow words to sink into me, when they start running through my head involuntarily throughout the day ?

I'm not giving up the church I chose.  I still love the congregation and denomination that ordained me.     And I love the people I've spent most of my Sundays with for the last 25 years.  I'll be there when paratransit gives me normal if not reasonable options (and whenever I get to lead worship!).  But sometimes when paratreansit screws with you, it's nice to remember you have options.  While much of my life includes hardship and restriction, when it comes to being fed through the Christian tradition, I am blessed with an embarrassment of riches.  Today, I need to remember that.
                             

Breaking the Rules

I'm having a crappy day.  It started when I couldn't sleep last night.  I was wide awake at 2:30 AM.  Usually that means I drank way too much coffee the day before, but I haven't been drinking coffee.  At all.  Well, almost at all.  For three weeks.  Anyone who knows me knows this is an apocalyptic event.  Coffee ranks second only to books in terms of my loves.  Or rather, addictions.  My stomach's been upset for three weeks .  Nothing helps much and coffee aggravates it, so no coffee.  Tomorrow I get to have an endoscopy to see if I have an ulcer. Joy.  I thought I was only a little stressed about that, nothing out of proportion, but last night suggests otherwise maybe.  It didn't help that I kept thinking, I have to get to sleep.  I have to get to sleep.  This is the best way I know to ensure that I don't sleep.  I wanted to go to church today.  I haven't been for a while because going means I have to ride around in the stupid paratransit van which has no discernible shock absorbers for about 2 hours (The trip should take 25 minutes, but it's a "shared ride" system and lots of people go to church on Sunday), and that upsets my stomach.  But I wanted to go today because I needed worship, needed to be fed, needed to be with people who've known and loved me for 25 years.  And it beat staying home and thinking about the endoscopy.  Going to church also means I have to get up at 5:30 in the morning.   When you're wide awake at 2:30, that seems like a very bad idea, so I didn't go.

The CNA who eventually came to help me get up and dressed was new.  Every time I started to transfer from my bed to my chair, she asked me questions.  I tried to explain that I couldn't answer her right now; I really needed to focus on what I was doing, but she wouldn't let me finish a sentence. When I started to ask her to call another CNA to assist her, to walk her through the process of assisting me, she took it as an affront to her credentials.  "I've been a CNA for nineteen years, " she said.  "I know what I'm doing."  She did call, but she also left shortly after the other CNA arrived.  I broke down in tears.  Couldn't stop crying.  The last time I cried this much was when my mother died, three years ago, I thought.  This was out of proportion. Maybe it was the combination-- the endoscopy, not going to church, the new CNA.  Maybe it was also that I have a rule:  If you have a similar problem with three different people, the problem is probably you, not them.  I don't complain a lot about CNA's, but recently I've complained about two.  I don't want to complain about a third, but this seems like more than a personality clash or the likelihood that she and I will never be best friends, and for the life of me I can't figure out how the problem in this case is me.

When I was finally dressed and in my chair, I had a little talk with Jesus.  In which I think he said, "Maybe you need to break the rules."  So I will go and complain about the CNA on Monday--or Tuesday, after the endoscopy.  And maybe I will break another rule--the one that says I don't go to church on three hours or less of sleep.   So for all you church people who read this, if  I show up next week looking like a zombie, you'll know why.  Please be kind.