April 2018

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.”
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.”

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.

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