Beginning Again

For my writing class, I have written three possible beginnings for a personal essay and outlined four others. It’s not just that I’m having trouble getting started. It’s that I can’t quite figure out what my story is. And I’ve been writing it for twelve years.

This difficulty getting started reminds me of the time, seven years ago, when I sat down with my niece Isabella, who was struggling to write her personal essay for college admissions. She had asked for help, but I didn’t want to help her if all she needed was a little encouragement, so I asked if she’d tried already. She said she had, and her eyes watered. 

“How many have you tried?” I asked.

“Eighty-five.”

I helped her. She graduated from Duke last year and now works for Twitter. The problem, clearly, was never smarts, and it wasn’t that she didn’t have anything to say. Maybe she was putting a lot of pressure on herself to write something that was both true and effective. Or maybe that’s my issue.

I’m not going to try and re-try 85 times, but I feel like I’m on Isabella’s trajectory. I keep thinking of Prufrock’s lines in T.S. Elliot’s poem, “The Love Song of J. Alfred Prufrock”:

When I am pinned and wriggling on the wall, 

Then how should I begin 

To spit out all the butt-ends of my days and ways? 

Prufrock seems to be trying to express love for someone, but he’s frozen, immobilized by his fear. I’m not trying to express love, and I don’t think I’m afraid to speak, but I do feel paralyzed. How should I begin?

First, I’m thinking and re-thinking about what I want to say. I’ve been so surprised about the gifts of these tumors that I haven’t been writing about the losses. I wonder if grief is at the heart of my story, and I need to address it. 

Thinking about this Sunday night, I wrote: 

My story is that I have never been conventional, one of the crowd, one to fit in. But I have tried. I was a feminist from a young age, staging my first feminist protest when I was five (or 6.) At 30, I divorced my husband and came out as a lesbian. Also, I did not choose a career where I might have made a lot of money, though I’m pretty sure I could have. 

Now disabilities have freed me—or cut me—from any possibility of being “normal.” Now I am not trying to be something I should be, rushing, overworking. I am more myself. Unconventional.

This has been freeing, but it’s also upsetting. In addition to being released from social expectations, I have lost parts of myself that I didn’t want to lose. So though there have been gifts from my tumors and disabilities, the losses are painful.

Although I’ve been writing about how grateful I feel—and I do feel grateful for my life and the gifts of this life—I’m also pissed. So far I’ve only been writing about gratitude, but I need to also write about feeling angry.

So how should I begin?          

Maybe I should begin with my anger, like this: 

The curb seemed steep, and I needed to step down it to get to my car’s door. Leaning my weight onto my cane, I struggled to remain upright while I stepped off the curb to my little blue Honda in its disabled parking spot. A middle-aged woman whisked past me. It was the end of the day at the high school where I worked as a literacy specialist, and I was so tired I couldn’t feel my fingertips. The speedy woman kept looking back at me on the way to her car in one of the two non-disabled spots past mine. I could feel her watching as she zipped to her car and I fumbled with my keys, cane and backpack. I hated being watched when I struggled.

She hollered over her shoulder at me, “You’re so lucky you get to park in that space!” Then she dropped into her car, ripped into reverse and spun her tires as she left the small lot.

I paused in my attempt to get the key into the keyhole, fuming. I wanted to yell something cutting at her, something that might make her regret such a stupid comment. I wanted to tell her that when I had walked more easily, I had parked further from the door, leaving closer spaces for those who needed them. I wanted to tell her I had hiked in the mountains, biked more often than driven, traveled the dusty backroads of lands where I knew neither the language nor the customs. I wanted to say I had been a high school classroom teacher, but I couldn’t manage teaching teenagers anymore, so after taking a year off for healing and learning to walk again, I was now working part-time, trying to help other teachers. 

I wanted to tell this zippy woman about loss and about how I was doing my best. I wanted to tell her the comment hurt. I wanted to hurt her back. But she was gone, so I returned my focus to my key, my cane, and backpack, held the window’s edge for balance, and worked my way into the car. Before driving, I took a deep breath and exhaled, shaking my head as if I could shake off how offended I felt. When my hands stopped trembling, I put the key in the ignition and backed out of the space. I drove home slowly, so I wouldn’t run into anyone. Each time an impatient driver laid on the horn, I pretended I had a bumper sticker that read, “Honk if you think I’m beautiful.” That way I could laugh at their impatience.

Sometimes, my losses since neurosurgery to remove my first brain tumor overwhelmed me, but I kept trying to return to the life I’d lived before surgery. I couldn’t. I felt frustrated and angry at this woman and at my life. 

Now, twelve years out from surgery, I’ve had radiation for a second tumor and survived a car accident that sent me to the regional trauma center. Now, I neither drive my car nor work for a living. I’m living a new life.

In this new life, I do not feel lucky for my losses. I do feel grateful for the gift of living more slowly, more patient and aware of beauty everywhere, more open to so much kindness, less offended by the rapid world I am no longer part of. I am making peace, but I’m not at peace. I wonder if I ever will be.

Or maybe I should begin with a moment of realizing my life had changed, like this:

I looked at the high school freshmen, and they looked back at me. Twenty-four students sat in chairs crowded into the square their teacher had marked with masking tape. For this moment, the students were quiet and still. I was not their teacher. I was a literacy coach working to help their teacher meet their learning needs. I wasn’t assigned to him because he was weak. He had a strong reputation and had requested we work together in this class he was teaching for freshmen whose middle school teachers and counselor had identified as at risk of dropping out. Each week, we planned together. Then I observed the class and we debriefed the session. The previous week, we had talked about this class’s need for a crisp lesson, and he had asked me to model this crispness. I was excited for this opportunity to lead a class full of students, something I’d seldom done since neurosurgery to remove my first tumor had left me with disabilities. 

I fumbled the papers in my hands, trying to hold my cane as well as holding the papers where I could read them. I needed to get started, but there was so much to figure out. How could I keep my balance and seem confident? How could I read and simultaneously pay attention to them? This used to come so naturally. Now, I couldn’t even get started. I knew their attention, I was fragile and likely to break, so I started talking even though I wasn’t ready. 

For the first ten seconds, the students looked quietly up at me, the closest boys so near they could probably see my hands trembling. When I struggled to hand out papers, these boys twisted to look behind them at the second row of boys who were kicking their chairs.  As I finally began to read from the example, the whole class giggled at one another and gave up even a pretense of paying attention. 

In our work together, Todd and I had been talking about how to teach his freshman class. It’s a lively group, smart but not scholarly, and Todd struggled to get and maintain their attention during lessons. I was also struggling, and I suspected I was not helping. This had been so easy in my imagination. Even Tricia, with whom I’d connected throughout the year, started giggling with the friend next to her, then yelled at a pair of boys in the back, “Shut up!” She was laughing. My stomach tightened like I was going to vomit. 

The students were restless, talking to one another over me. I tried to continue, but it was impossible. I just couldn’t do it. I could not do what I used to do. I looked at Todd.

Todd scolded the class for treating a guest teacher so rudely and regained the responsibility of working with the group as a whole. For the rest of the class period, I worked with smaller groups. After the class, Todd and I discussed what we had learned about the students, what we wondered, and what his next steps with these students might be. 

After the debrief, I confessed how hard it was to experience what I could no longer do. In this moment of quiet reflection and confession, I wept. A tear slipped from my left eye, running warmly down my face. My right eye had not teared since surgery. I couldn’t even cry like I used to. 

It was time to acknowledge that the high school teaching part of my life was over. I was no longer the person these students and their teachers needed.

I ‘d need to feel gratitude for the time I’d had, and to seek my new adventure, but I wasn’t yet ready for gratitude. I hurt with loss.

Or maybe I should begin with the emotional complexity of the gifts and losses I’ve experienced, like this:

I sat on a log in the shade while my partner Ann throw a miniature tennis ball for our dog Dosey. Ann threw. Dosey ran. I sat. 

It was a blue sky day in usually rainy Seattle, and the April air was cool without the hint of snow it had all winter. Ann picked up the orange and blue ball to toss it underhanded across the dog park’s square. Dosey raced off before Ann had even gotten the ball. Dosey’s hair streamed back from the force of her speed, and her tail, usually a fluffy plume, flew straight behind her like a flag on a windy day.  The ball hit a tuft of spring green grass and bounced high in front of her. As she leapt and twisted her twelve-pound body to snatch the ball, her brown ears flopped back, and her body’s white hair gleamed. I could swear she was smiling as she trotted back to Ann, dropped the ball a few feet in front of her, and dashed off again. 

I loved watching our puppy playing so joyfully, and I felt frustrated that because of my disabilities I couldn’t drive her to this park or throw the ball myself. I could only sit on this log in the shade, my cane close at hand, and watch.

I knew there were gifts from my tumors, and Dosey was one of them. We couldn’t have had a dog before my brain tumors. In those days, we both spent our week-days at work. I was away from home most of the day, rising at four a.m. to be at the gym by five to swim and lift weights and hurry through my sun salutation before my workday began. 

This was a happy day, and mine was a happy story. Through my losses, I had learned to live differently and found a kind of peace in my slower, unemployed life. My wife was lovely, and my dog smiled. Without this disease, my life with my wife would be different than this one. We wouldn’t have a puppy. How lucky I was. 

I could think cheerful thoughts, but I didn’t feel happy. The muscles around my throat tightened, aching from the strain. I felt a gob in my throat that I couldn’t swallow, and I couldn’t pull enough air through the nostril that took in air today. I ached, but I smiled. I held my body stiff, still. I would not cry. 

…

I can imagine so many ways to begin. After all, I have a lot of stories in me. It’s been twelve years since surgery, and a lot has surprised me. Tired of drafting beginnings, I went to shorthand for the next four:

1.    Being helped across a street I did not want to cross. I stood on the corner and thought about: 

a.    Complications from surgery—conversation with nurse Joey or learning to walk

b.    After surgery: The graduate class I couldn’t participate in.

c.    Who I thought I should be—golden retriever

d.    Sleeping at Susan and Rod’s

My “helpers” gave each other high fives. I crossed back.

2.    In the trauma center, after the car accident. Sitting with Ellen—"Ann’s been through too much.”

a.    Surgery. “Complications.”

b.    “Goldie”—Alex’s nickname for me because I always wanted things not too cold and not too hot; not too hard and not too soft; not too loud and not too quiet…

c.    Working with Todd and realizing I couldn’t do this work anymore.

“I changed my mind. I would like some morphine now, please.”

3.    Watching the boys kick the trash can and stopping them

a.    The graduate class when I couldn’t participate

b.    Being helped across the street

c.    The prayer in the park

Intervening

4.    Sitting in the office that used to be mine—What I see and what I remember

Jargon like “summative and formative assessments”, “metacognition”, “NCLB”, “UDL” (Universal Design for Learning)

a.    Surgery

b.    Principals’ certification

c.    The boys kicking the trash can

Leaving the office/meeting with my colleague

Main idea—My life had changed. I needed to accept that there had been losses without being sunk by them. 

And later: That’s what life is. Pissed and grateful at the same time.

Now I think of Walt Whitman in "Song of Myself": 

                              Do I contradict myself?

         Very well then I contradict myself,

         (I am large, I contain multitudes.

-->

Perhaps my story is not so tidy as I had thought. I guess I need to write a more complex story, but I’m not sure how. What do you think? How should I begin?

Routine, Interrupted

Monday night, Percy, our dog Dosey’s BFF, came for a sleep-over. Dosey’s a 12-pound Cavapoo, a King Charles Cavalier and miniature poodle mix. Percy’s a miniature Australian Shepherd, but he’s not tiny. At 45 pounds, he’s about four times Dosey’s size, but he’s a gentle, sweet dog. 

Most days, Dosey stalks Percy’s home. When I take her for a “walk,” she goes to Percy’s house, and if he’s not there she returns home. If he is there, the two whine like they haven’t seen each other for years. When I let her in Percy’s back yard the two race around and wrestle for maybe five minutes. Then they ignore one another until Dosey starts digging like a maniac, and I tell her it’s time to go home. Nina puts Dosey’s leash on, and Dosey and I head out the gate. Neither dog seems too upset that we’re leaving. Hello is the most important part of the routine. 

Monday night, Nina brought Percy and his giant bed into our home, and the dogs wrestled and raced, then ignored one another. A few times, Percy looked at the door and cried, confused about why Nina had left him here and wondering when she was coming back. Mostly, the BFFs were happy to be in one another’s company, though when Percy started rooting through Dosey’s toy box, she scowled, an expression I’d never seen on her face before. 

At bedtime, Dosey and Percy curled up in his bed near the foot of ours, but sometime in the night Dosey went downstairs and Percy stretched out on the floor beside Ann’s side of the bed. We all rose around 5:00, and when the time seemed reasonable, Ann took Percy and his bed home. As much as Dosey and Percy love one another, I think both were relieved to return to familiar routines. I was, too. 

When Ann and I decided to get a dog, I wanted a furry being to nap with or sit in my lap while I read. Ann wanted something that would break us from our routines. We got both. Fortunately, most nights Ann and I still get our sleep-through-the-night routine.

This has been a month of broken routines, however. Often in good ways, but the changes throw me off. One week, Ann and I travelled to Palm Springs, where we vacationed with her brother and sister-in-law. My critique group, which usually meets weekly, hasn’t met all month. Monday my parents will come from NC for five days. And—horrors—our tv died. 

We’d had our old tv for about fifteen years, and I was just beginning to figure out the remotes, but then the sound stopped and the trouble-shooting technician told us it was dying. So we bought a new one, and Ann installed it. Though she got frustrated, I don’t think she cried. 

It turns on. We celebrated our 24^thanniversary of living together by sharing a tasty halibut meal and then watching the first thirty minutes of A Fish Called Wanda. We wanted to see if we could figure out how to watch a movie. We’d both seen this one decades ago but didn’t remember much about. About fifteen minutes in, Ann’s head started jerking to the side, a sign that she was falling asleep, so we called it a night. 

Dosey slept in her bed and we in ours, and in the morning, Ann and I did yoga. Dosey did downward-facing dog and upward-facing dog, like usual. Ah, back to our routines for a few days. 

Of course, life is full of broken routines. My parents have moved from the home where they lived for 45 years. My sister and her husband are moving from the home in New York where they raised their kids to a beach house near Charleston, South Carolina. My brother’s getting married, and his teenage kids will be in the wedding. Ann and I have gotten on a waitlist at a retirement home.

I remember a college friend saying, “If you’re not changing, you’re dead.”

Not dead yet.

Circumstances we can neither name nor control

Wednesday afternoon, I rode the Rapid Line D bus from North Seattle to downtown with a friend. Crowded as usual, the bus took on more passengers than it let off. A democratic means of transportation, it welcomed all riders. Maybe some people paid and some didn’t. Certainly people paid different fares. As we rode, my friend and I talked about how much we loved the bus.

Downtown, the driver helped a woman he called Judy off the bus. As he lowered the ramp for her to disembark, she pushed her walker in front of her. She navigated the aisle, and I admired her purple silk pants. “You may have time for a cigarette before the 4 gets here,” the driver said to her as she was leaving. 

I love this place of being known and being anonymous. 

A few years ago, a friend’s neighbor at a wine tasting and I were talking about riding the bus. She curled her lip in distaste as she said, “I hate the bus. All that unwashed humanity.” Then she sipped her wine, her hand curled in a caress around the wine glass.

“I love all that unwashed humanity!” I enthused. It seemed clear she and I wouldn’t be friends.

I thought of all these people when I read the news later that that same day, on another bus in another part of the city, a man shot into the bus from the middle of the street. The driver, miraculously, backed the bus to safety. A man driving his car was shot and killed. 

What to make of this? Judy with her purple silk pants, the driver who knew Judy’s name and habits, unwashed humanity and those who love or don’t love them, the bus driver who was shot, the car driver who was killed, the shooter, the bus I rode and the bus I didn’t…

So much depends on circumstances we can neither name nor control. 

The thought takes me back to the film Run, Lola, Run.The film re-shows the same event maybe six times, each with slightly different circumstances (for example, in one a car backing out of an alley slows Lola’s running). The slightly differing circumstances lead to dramatically different endings. The film seemed to argue small changes make huge differences we can neither name nor control.

Last night, Ann and I watched the film If Beale Street Could Talk, based on a James Baldwin novel. The film shows a young black couple whose lives are torn by the false accusation by a woman who was raped. In the film, the circumstances can be named as systemic racism but cannot be controlled. 

I went to bed thinking of my own life, at the accidents of race, gender, economics, nation, citizenship, and time that have defined my life. 

Of course, my brain tumors, gender, disabilities, and homosexuality have situated me outside of those who hold the most power in this country, but I have been mostly privileged in my life. I wish everyone were. I don’t how to help that become a reality. The inequity feels out of my control. And out of control.

Resolved

Last Sunday, I went to church pissed. My little church was one of the first Methodist churches in the country to celebrate, not just “accept” gay people, and the sanctuary has been a home for me for decades. My congregation prayed for me when my brain tumors were diagnosed. From this congregation, I made friends in a rural Salvadoran community. My partner and I became wife and wife there. 

Last week, the international Methodist church voted to maintain language in the Book of Discipline that says “Homosexuality is not compatible with Christian teaching.” The international body increased penalties for pastors who are found to be gay or perform gay union ceremonies. 

I argued years ago, when a lesbian coming out committed suicide, that our church should separate from the larger church. How could we remain part of an unjust organization? I was told our church needed to remain part of the larger organization in order to change the larger church from the inside. 

It’s true that the Western conference to which our church belongs embraces those of us who are LGBTQIA+. In fact, at the end of the General Conference which just occurred, the final proclamation came from our bishop, asserting that the Western Conference would continue to defy the larger church’s rules. 

The worry among many Methodists in the years leading up to this decision was that the church would split over “the gay issue.” If that happened, the argument went, U.S. connections to African and Pilipino churches, to their people and ways of understanding the world, would be severed.

It occurred to me in an after-church report on the conference that we are already split. The question, it seems to me, is not a spiritual one so much as a legal one. Will we continue to be part of an unjust system, or will we break away. To quote our church’s much-revered Cecil Taylor, “We must save our souls.” We must break away. 

That’s what I think now. I’m not pissed. I’m resolved. 

It’s true that separating will be complicated. Who will separate? Will churches leave individually, or will the more liberal churches leave together to create a new denomination? Will our church keep our property? Will retired pastors still have their pensions? What will happen to LGBTQIA+ members of more conservative churches and conferences? 

Each of those questions is big, and I don’t know the answers. I can’t even guess at them. The only thing that seems clear to me is that our international church has already split. Our divorce seems inevitable. And necessary.

I wonder if one day I’ll say the same about our nation. I pray not, but I wonder.

A Semi-Good Woman

My long-time friend and neighbor Annabella died last week. She would have been 99 on April 20, and she was in hospice because she had stopped eating and drinking, so I knew her end was near. Her death was not a surprise, and yet I miss her.

My partner Ann and I visited Friday afternoon to say good-bye. Before we entered her room, a worker asked us to wait so she could “change” her. I thought this would be for toileting, but the “change” took only a minute, so maybe she was being repositioned which would have helped prevent pressure sores. As we waited, we heard a young woman saying into her phone, “Her breathing is shallow.” We guessed this woman was Annabella’s hospice nurse, and we were glad our dear, spunky friend was being so cared for.

When we entered Annabella’s room, she was lying on her side. Her eyes were closed and the skin on her face was relaxed. She was clean and looked beautiful in her soft blue sheets. She looked remarkably like her younger daughter, something I had never before noticed.

Ann leaned over Annabella, her hand resting on Annabella’s thin arm. Ann said, “Hey girl,” which is how Annabella had always greeted us. Ann recalled good times the three of us had had together. Annabella lay quietly, as if in an easy sleep. After a few minutes, Ann said, “I love you,” and stepped back. 

I stood from my chair and leaned close to Annabella, trying to rest my hand on her leg but finding instead what must have been a box under the covers to vary her position. I recalled times we had laughed together. I remembered the time years before when Annabella had been talking about her death. She said, “When I die, they’re going to say, ‘That was a semi-good woman.’” I told her she might have been a semi-good woman, but she had always been a good friend to me. 

I stepped away, and Ann approached again to say a final good-bye. As she spoke Annabella made gurgling sounds. Her eyes were still closed, but she seemed agitated. Maybe she was trying to speak, or maybe she was just trying to breathe. Maybe she knew we were there, and maybe she didn’t. Ann said, “You don’t need to say anything. I love you,” and Annabella settled again into soft, shallow breathing. 

Ann and I have known Annabella since we moved into this neighborhood 23 years ago. Soon after we moved in, Ann and I delivered invitations to a house-warming for our neighbors. As we came back to our home, the phone was already ringing. I answered it.

“Hi,” said a gravelly voice, “I’m Annabella. Your neighbor. I drink beer. Not the hard stuff. Beer.” I tried to assure her we’d have beer, but the line went dead. She’d hung up. I’d learn over the years that was how Annabella ended a phone conversation. I’d also learn to love her. 

When she was a spry 91 years old (and she was spry), I told her I was writing a book, and she said, “Books are boring. ‘The sky is blue. The grass is green.’ You should write about me. I’m interesting.” So I started interviewing her and writing down details of her life in New Orleans and Seattle, including her work as a Riveter during WWII. I wrote funny things she said. I did publish a couple of pieces about her, like this one celebrating revolutionary women in this area

She’s schooled me through the years. She said, “It’s good to live a long time to tell the stories.” She told me more than I can share here, but I’ll try giving you a taste of her independence, humor and wisdom.

Annabella was stubborn and strong-headed. We didn’t always agree. She liked to say, “The Lord makes fools and mules, and I’m no fool.”  Once, when she said something dicey, she said, “I tell it like it is.” Another time she said, “Don’t tell me I’m wrong because I know, and I don’t mind telling you.” 

She was gruff, but she could also be sweet. Once when we were eating at The BluWater, her favorite restaurant around here, she said, “I’m different than most people, but people like me. Why? They kiss me, and I tell them I love them.”

Once, she said, “I know a lot because I’ve lived 93 years.” Another time she told me, “I can cuss. It comes natural,” and later, “If you need to cuss, you can learn from me.” Remembering her childhood and the mom whom she adored, Annabella said, “My sister drew back when my mom was gonna whip her. I’d curse her out.”

Annabella was funny, and she could also be wise. A “colored” woman, she taught me a lot about race in the U.S. About the integration of schools, she said, “I just really think you shouldn’t have all White or all Black schools. You don’t learn anything like that.” Maybe she learned that from forty years volunteering in elementary school classrooms.

Annabella was a devout Catholic. Once, she told me, “I may be bitchy, but I don’t miss mass.” She loved Ann and me. One night, I pointed out her demographic: “colored,” elderly, Catholic, Southern born and raised, and asked why she bucked a trend that indicated she would reject us because we are lesbians. She pointed a knobby finger to her temple and said, “I have my own mind.” 

As Annabella got deeper into her nineties, she talked more about her death. One morning she told me, “It’s already a beautiful day. Every day’s a beautiful day when you wake up.” She won’t be waking up anymore, and I’ll miss her, but my days will be more beautiful because I’ve known her. 

House-bound

I spent most of the last two weeks in my house and developed sympathy for people under house arrest. After the first day or so, I sought whatever might distract me from my imprisonment. I went to my email several times in an hour, hoping there will be something new awaiting a response. I revised multiple drafts of pieces for my weekly writing group. I also wrote several “flash non-fiction” pieces for an editor who had only asked for one. I cut my fingernails. And my toenails.

Why? Seattle’s gotten more snow this February than in any February since the city started keeping records in 1880. In fact, this has been Seattle’s snowiest month in 50 years. 

As a disabled person, I’ve felt trapped, or “twapped” as my young nephew said decades ago. (When he was three, we rode the train around and around an amusement park, and each time we reached one spot, he got agitated and kept yelling “twapped.” My partner Ann finally figured out that the painting of a caged monkey upset him.)

Because I walk unsteadily, I didn’t risk walking down the sidewalk in front of our home. So I haven’t left the house much. Last Monday, Ann vowed she’d take me out, and she drove the slick roads to our YMCA, which we’d read was open. It was open, but the parking lot was not. Again, I was “twapped.” We returned home.

I felt house-bound, which reminds me of the term “wheelchair bound,” and one user’s comment on the ridiculousness of the term. She argued that the wheelchair freed her to move around. She was not “twapped” by it; she was freed. (BTW, don’t say “wheelchair-bound.” As the article in the link explains, “To say someone is ‘wheelchair-bound’ is to perpetuate an unfortunately popular misconception that someone’s wheelchair is the most prominent and important aspect of that person. It’s as if the person who uses the wheelchair is not really a person, but rather some type of machine.”)

         Yes, I’m talking semantics here. I think they’re important. I’ve often heard someone say, “just semantics” to dismiss a person’s point. I find that foolish, and I’m not the only one. 

         Understanding words is essential to clear thinking that goes beyond biases and assumptions. One of my favorite Ticht Nhat Hanh quotations is, “A finger pointing at the moon is not the moon. The finger is needed to know where to look for the moon, but if you mistake the finger for the moon itself, you will never know the real moon.” To me, this quotation acknowledges how limited language can be in describing truth—and by extension how important it is for us to recognize language’s limitations. 

         To some people, I know semantic discussions are frustrating, even seem ridiculous. To me, they are essential. In the twelve years since I’ve become disabled, I’ve been intrigued by disagreements about using the phrases “disabled person” and “person with disabilities.” I’ll tell you how I understand this right now but put your metaphorical seatbelt on. It’s going to be a wild ride.

         People who aren’t disabled and want to be respectful, signaling the social model of disability instead of the medical model use language differently in the U.S. from those in the rest of the world. (“The social model of disability says that disability is caused by the way society is organized. The medical model of disability says people are disabled by their impairments or differences.”)

In the U.S., people who aren’t disabled and want to signal their association with the social model of disability use “person-first” language. That is, the person is more than the disabilities. The person is first human. Therefore in the U.S., this group of people uses the phrase “person with disabilities.” 

Those in the U.S. with disabilities, however, may choose to describe themselves as a “disabled person,” emphasizing the importance of the disability to their identity. As I understand it, this expression is a sort-of defiant in-your-face identity. This is how I now describe myself, though I’m not very in-your-face, and until recently I called myself a person with disabilities. 

         In places outside the U.S., people who want to signal the social model of disability use language in the opposite way. They say, “disabled person.” (The link takes you to a good Ted talk. I recommend you listen to it.)

         So where does this leave you? If you’re in the U.S. and ascribe to the social model of disability but don’t have disabilities yourself, use the phrase “person with disabilities.” If you’re in another part of the world, use “disabled person.” And if you’re disabled, you have decide. Yes, it’s harder for you. Everything else is, so why not language?

And then, of course there’s more. There’s “disability justice,” which is the theory I now ascribe to. As one writer who ascribes to this theory wrote, “I want to the world to see people with disabilities as whole beings, whether our disabilities are physically marked or not” http://feministcampus.org/whats-disability-justice-anyway/ I can’t figure out how to write about disability justice without being a “saucy pedantic wretch,” and perhaps this semantic lesson is enough for now. 

It’s good you’re reading this today, because by tomorrow this may be out of date.  After all, like our lives, our language keeps changing.

 

 

 

Sports and Politics

Last night, watching the State of the Union address, I felt like I was in a high school sports arena. Congress—Democrats and Republicans, men and women—erupted three times with a U-S-A chant. Trump said he liked the sound of the chant, and its tone and lack of dignity seemed appropriate in a speech weighted with words about “winning” and being the best, “the envy of the world,” with our military the “most powerful on earth.” I did not like the chant. Not at all.

Sports is not an appropriate metaphor for justice, policy or culture. We are not—or should not be—in a win or lose contest with the rest of the world, where we can win while everyone else loses. I don’t think we can prosper because others fail. In fact, it seems to me that in order to live well in the U.S., we need a strong world economy, a world at peace with its neighbors. What happened to “a rising tide lifts all boats”? 

These times worry me. They upset me. It’s not like I can look back to an ideal past, a time in this country when all was right and just, but I feel like we’re moving in the wrong direction. 

Ann read Michelle Obama’s Becoming to me over the past few weeks. The book was surprisingly well-written. (I’ve been writing a memoir for the last decade. It’s hard to do.) It was frank and hopeful. 

But I found it depressing. Sunday after church, I asked a friend, “How did we go from those hopeful years to the last two?” Though I seldom cry, my voice cracked with emotion. And that was before Congress erupted into Friday night football cheers. 

I need to say here that I generally hate State of the Union addresses, with manipulative rhetoric and one team’s fans standing and cheering while the other team sits dourly, arms tightly crosses across their chests. I hate these addresses even when I like the president. Maybe I hate them because they show in bright lights our country’s worst blemishes. They expose our nation’s divisiveness. They ignore complexity and nuance, exposing the simplistic duality of our politics: red or blue? 

I’m looking for hope, belief in Martin Luther King’s moral arc of the universe bending towards justice. I don’t find that hope in politics or national systems. I do sometimes find it in individual stories of grace, instances of one person helping their neighbor, times when people live through loss and tragedy.  

In her book, Michelle Obama writes,“Life was teaching me that progress and change happen slowly. We were planting the seeds of change, the fruit of which we might never see. We had to be patient.”

Her words echo Bishop Ken Untener of Saginaw’s words: 

It helps, now and then, to step back and take a long view. 

The kingdom is not only beyond our efforts, it is even beyond our vision. We accomplish in our lifetime only a tiny fraction of the magnificent enterprise that is God's work. Nothing we do is complete, which is a way of saying that the Kingdom always lies beyond us….

We plant the seeds that one day will grow. We water seeds already planted, knowing that they hold future promise. We lay foundations that will need further development. We provide yeast that produces far beyond our capabilities.

We cannot do everything, and there is a sense of liberation in realizing that. This enables us to do something, and to do it very well. It may be incomplete, but it is a beginning, a step along the way, an opportunity for the Lord's grace to enter and do the rest….  

I’m simply not good at patience when patience means accepting that people are dying and hurting from human causes that could change. I see that Michelle Obama, Martin Luther King, and other wise ones take the long view, and if I were wise, I’m sure I’d do that. This is one way of many I know I’m not yet wise. 

But I’m not dead, so there’s hope for me yet.