A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Monday, February 27, 2017


I didn’t sleep well last night. Maybe you didn’t either. I kept worrying about whoever made the envelope error that resulted in the wrong announcement for Best Picture. “It’s La La Land…. No, it’s Moonlight.”

As cute cousin Michael said, “That was awkward.” (The go-to word for the millennium. That and “random.”)

I have always beat myself up for my own errors, so I’ve been fretting about the person who made the mistake. How are they? Are they beating themselves up? Did Trump do it? (the inside scoop)

 I was glad Moonlight won. I would have liked Hidden Figures or Fences, too. I liked Loving for the story it told, but it wasn’t a great movie. Not Manchester by the Sea. It was just too depressing.

I haven’t seen La La Land, and I probably won’t. This doesn’t seem like the time for an escapist movie, a romance to take me away from real world problems. As speechmakers like to say, art is about truth, and I’ll add that the truth is that there are serious issues in our nation, issues for journalists and artists and activists….

Dad pointed out that all the movies I liked were Black movies (or, he said, “half Black” in the case of Loving.) I liked Hidden Figures because it was a good movie, and it was about an historical truth about Black women, a truth that isn’t in our history books. (Neither was the Japanese Internment when I was in high school anyway.)

I also liked August Wilson’s Fences, but I suspect mixing the genres of film and stage theatre didn’t work for a lot of people. And I liked the James Baldwin documentary I Am Not Your Negro. Though Baldwin died in 1987, the script rings true today, as the contemporary images woven through the film argue. (It wasn’t up for best picture and didn’t win best documentary, but I thought it was great.)

So why do I, a white woman (pasty some would say) like all these Black movies, you and my dad may be wondering. As a woman and a lesbian and now a disabled person, maybe I identify more with the outsider’s narrative than I would have in my younger heterosexual and agile years. Maybe. But as a girl and then a woman, I have always noticed sexism in our culture, and it has always pissed me off. So in some sense, I have always identified with the narrative outside of the power structure.

These days, with Trump and his buddies in office, I feel my vulnerability as a disabled lesbian more than ever. And I want to see  the human story of the unseen in my newspapers and my art.  Perhaps I am more open to that story than I was in my less vulnerable years.

I don’t want an easy movie right now. I want a movie that helps me understand voices and histories that both are and are not my own, even if those stories are hard. As Reverend Barber III says in The Third Reconstruction (a book of both hope and truth), “Peace with God means conflict with the world.”

I have thought a lot in the last months about my friend Dave’s observation that I like to be safe and comfortable. That’s true. So maybe I seek films that make me uncomfortable—or really films that make other people uncomfortable.

And maybe I need to let go of perfectionism in myself and others. Maybe that’s part of God’s peace, too. Perhaps to see and hear truths I need to be willing to make mistakes. Perhaps relinquishing this perfectionism can be a tiny part, a tiny step along the way, but a beginning to truth. And perhaps the truth will set us free. And for sure it will be uncomfortable. 

Friday, February 10, 2017

Cresting the 5-0 Hill

Dearest Sister Jen,
         Sister Jen, you have always been the little sister I looked up to. Well, maybe not always. There were the days before you could spell, when my friend Ande and I tortured you by spelling her name, “A-N-D-E” and pretending when you called out to mom (“Mom! They’re spelling again!”) that we were just saying it.
Even when you were trying to keep up with an older sister who wasn’t always as kind as she should have been, you had your limits, your sense of self. I remember the time Ande and I made mud pie and tried to get you to eat it. You refused, and I was flummoxed. What? You’re refusing me?!
Similarly, there were the years when you traded me dimes for my larger nickels, and then there was the day when you wouldn’t trade any more. You weren’t taller than I was yet, but I think that’s the day I started looking up to you.
Though I was too often unkind, we did have fun together. Do you remember riding my back as we cleaned up my room (Alas, we never cleaned yours). We pretended that there were alligators and that they couldn’t bite me, so you rode on my back and I carried you around the room picking my things up off the floor and putting them on the bed for me to put back on the floor later.
And, of course, I helped prepare you for school: I’m pretty sure you were the only first grade student who could spell “idiosyncrasy.” That’s probably why you got to be a crossing guard and then were selected for the Morehead.
On the famous trip out West, we shared a cozy warm (even hot) room, unaware that Mom, Dad, and Little Brother Matt were freezing, Matt sleeping on the floor with just a thin blanket. And there was the Monopoly game where Matt trounced us and yet enjoyed the game less than we did. Apparently, he didn’t like his new nickname or the alliterative newspaper headlines announcing his win: “The Mighty Mole Makes Millions.”
I have loved your sense of humor, both clever and incisive. In high school, when you and Ellen were talking with someone who had a booger showing in their nose, one of you would just blurt, “Booger.”
You’re the one who told Dad I wanted a car, (I didn’t have the guts to ask for such a thing), and you and Mom came to Davidson on my 21st birthday to give me a toy car, a symbol for the real one I would later buy with my birthday money.
From time to time, someone saw me and said, “Jennifer?” I was of course flattered to be mistaken for my smart, beautiful, gutsy little sister.
Before I came out to the family, you knew me well enough to know something had gone awry and wrote me a letter asking me to be real with you. My coming out letter crossed yours in the mail, and I received an envelope from you in return with lots of headlines, like Ellen Degeneres coming out, and only the note on the outside: “You’re in.” The note and the headlines made me laugh and breathe easily for the first time in years. You have supported Ann and me from the beginning.
You and I have lived on opposite sides of the country for decades now, and I wish I could see you more, but I always look forward to our Christmases and our week at the beach together. I remember fondly the year after my brain surgery when you read aloud my childhood friend Heather Newton’s novel.
And of course I remember that you had brain surgery a few years before I did and gave me excellent advice before my surgery: 1) Always accept help. 2) Whenever they say, “Morphine,” you say, “Yes.”
I also remember that you came to take care of me one week when Ann needed some space. Though my memory is bleary from those days, I have two crisp memories: 1) When my headache got so bad that I needed to go to the emergency room, you got me in the backseat of our little Honda and crammed the wheelchair in the front. (I still find it amusing that it didn’t occur to either of us that they would have wheelchairs at the hospital.) 2) You were so friendly with the nurse, a burly, hairy guy, as you two talked while I waited for treatment. You were offended on his behalf that he had to pay for parking while he worked. Though you live the life of the wealthy now, you have always been interested in people and their stories and have treated everyone that some people might have looked down on with grace.
         Welcome to the other side of the 5-0 hill. Today, you’re on the crest, seeing both the way you came up and the way you’ll go down. I’m looking back down the way you’ve come and also, for once perhaps, a few steps ahead of you down the other side.
         This side of the mountain gets a bad rap, but it’s lovely, too. There are upsides to down hill. Your beautiful children are growing up; your husband stays by your side (I remember you saying a year or so ago, “It helps that he still looks good.”); you have job you like with people you like; and you’re still funny, smart, beautiful, and gutsy. 
         And you have an older sister who adores you.

Friday, February 3, 2017

What is there to life, really?

At a social work class on disabilities where I was presenting last week, a student asked, “You’ve already graduated. Why do you still do this work (for disability justice) at the University of Washington’s School of Social Work?”

The question stumped me, and I gave a lame, though partially true, response about the fact that because I can’t work and I live on SSDI, (I might have added savings, investments, insurance, my parents’ gifts and Ann’s retirement, but the statement would have been too long), I have the time to focus and enough money to live, so that frees me to work for social justice.

My response was true, but it only revealed a smart part of my truth. The larger truth is that I want to live a meaningful life, just as I did before my disabilities. I suppose we all want to live meaningful lives, and we’re trying to figure out what that means for ourselves. To me, to live a meaningful life means to work passionately because I care so much about what I’m working for. It means living a life that is meaningful to myself as well as others.

Maybe because my life has been rooted in the Southern Baptist faith of the church where I grew up and in the bright shadow (is there such a thing?) of the Civil Rights Movements of the 1960s, I believe my life is about love and justice. My brain tumors didn’t end that, and neither did my graduation. Since my brain tumors, my daily work has shifted from underserved students in American high schools to working for a more nuanced cultural understanding of people with disabilities. So my daily work has changed, but my belief in what’s right—a world where people can make choices about where and how they live—has not changed. I have also believed that justice begins with education, another piece that has not changed. 

My Auntie Myra always had a cross stitch framed on her wall that had the image of a flower blooming by the stitched words, “Bloom where you are planted.” I admire Auntie Myra, and I suppose the words were meant to be encouraging in a time and place of struggle, but I always found them depressing. “I will not be planted,” I said to myself each time I passed the cross-stitch.  “I will keep power in my own life.” (My mom had a refrigerator magnet with different words but a similar sentiment: “Celebrate what is.”) The strong women in my life seemed to me to be sporting women’s wisdom that told me to make do with what the world gave me and to be happy about it. I would not.

I will not. My call is to celebrate what is right and just, to celebrate love and kindness and wisdom. But my role is also to challenge what is wrong, unjust, small-minded and small-hearted.

My twenty-seven years of employment in secondary schools moved me further and deeper into an education that supported students living in poverty, often with the additional oppressions of languages other than “the king’s” (or the CEO’s) English, and whose memories of childhood went back to other lands and to the ravages of war. And sometimes the vulnerabilities of undocumented, poor, imprisoned, addicted, uneducated and/or disappeared parents.

As I grew in awareness of injustices, Martin Luther King, Jr.’s exhortation, “It’s always the right time to do the right thing.” https://www.brainyquote.com/quotes/authors/m/martin_luther_king_jr.html
challenged my slow-moving self to move into spaces of injustice to see what I might do there, rather than waiting longer to learn what might be possible before moving.

I finally moved after meeting people in rural Central America, first to do volunteer work in rural Michoacan in the 1980s and in the 21st century to come to know and learn from people in rural El Salvador, who had built a community after seven years in refugee camps, fleeing the violence and terror of many American-funded and trained brutalities.

A commitment to radical love drove me to my work in secondary education, and two brain tumors drove me from it. The shift, however, is away from a particular way of doing things, not from a life’s work for justice as I understand it. After my brain tumors and their treatments, I became aware of unnecessary injustices of people with disabilities. 

I had experienced discrimination before: as a Southerner, a woman, and a lesbian. Each experience broadened the world I belonged to. When I faced my own discriminations and oppressions (micro and macro) due to my disabilities, I took a detour from my path through the world of secondary education: I didn’t head to the other side of Justice Mountain; I’m just walking a connected path now, a path on the same side of the mountain, one that has me more aware of both my privileges as a married white person with adequate resources and also my oppressions as a Southerner ("Yes ma'am"), a woman (“Hear me roar”), a lesbian ("Hear my partner roar, too) and now as a disabled person (“No. I will not get better. I am better.”)

As I studied disability justice on my own (it wasn’t part of my social work education), I learned about Ed Roberts, the father of the Disability Rights Movement. Roberts tried to kill himself after he experienced permanent paralysis from the neck down and overheard a doctor tell his mother, “You’d better hope he dies because if he doesn’t, he’s going to be a vegetable for the rest of his life.” (As a side note, if you’re ever around a person you think can’t hear you, don’t say anything you wouldn’t want overheard. I heard two Intensive Care Unit nurses whispering about the nurse who had cared for me overnight after my brain surgery. They clearly disapproved of her, and I heard one say, “One of these days, she’s going to kill someone.” She was also someone I had known before my tumors. For her sake and for mine, I was glad she hadn’t killed me, and I didn’t like the gossiping nurses.)

Anyway, Roberts stopped trying to starve himself to death after his final nurse left and he had power in his life again. In a “Sixty Minutes” interview by Harry Reasoner, Roberts talked about this move from despair to power: “We make such fundamental errors in taking care of people all the time. Think about your own life. If you had people taking care of you, making all your decisions, what is there to life, really? In almost all of social programs we set up take care of us or put us away in institutions to be cared for.” http://mn.gov/mnddc/ed-roberts/sixtyMinutes.html

My experiences weren’t as stark as Roberts’, but I had a doctor who didn’t want me to take the risks that living people take. My doctor didn’t want me to die, like Roberts’, he just didn’t want me to seek ways to live a meaningful life if that meant I’d need to risk failure. As my doctor in this medical world of ours, his opinion might have limited my ability to take a new path because he was afraid I would fail. His opinion and his power pissed me off. I think I still have the right to risk.

I see myself as a social justice activist, and I went in to public school teaching and leadership because I believed that education was the place where I could make a difference for people in the U.S. who were oppressed, but then I had to leave my teaching career after 17 years and finally the field of public school leadership after another five years. What does my life mean now? It’s a question I’ve been asking myself since I woke from neurosurgery. And in asking the question, I assert that, as a person, I deserve to live life on my own terms.

Thinking about this, I listened this weekend to Leonard Cohen’s song about loss:

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything (there is a crack in everything).
That’s how the light gets in.

(It’s excellent. You can listen to it from Cohen’s 2008 London concert on Youtube:

So I seek now to ring the bells that still can ring (or at least the bells I can now ring). That’s why I’m still doing this work though I’ve graduated: if I can make a difference to people who experience pain and misunderstanding, whether it be students with disabilities or the people they will serve, I want to do that.

Though I no longer teach in a classroom, I still believe in the importance of education, and I believe my experiences as an educator inform the work I do. I still work with teenagers sometimes: I volunteer to work with high school students in the Seattle School District who aim to be the first in their families to go to college. I also hope to work with homeless teenagers in finding their own voices. (I’ll let you know if that works out.)

But my scope is broader: I know now that I love Iconnecting with others who’ve experienced life-changing health conditions, including the elders with whom I’ve explored poetry for the last sixteen months.

I seek to bring more love to the world. That’s it. My dad says that’s noble. Maybe. Or maybe it’s selfish: it’s a way to believe my life is still meaningful. Or maybe it’s both noble and selfish.

Anyway, that’s a fuller answer to why I do what I do.