A Photograph of me without me in it

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

Thursday, February 21, 2019


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.
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.




Wednesday, February 6, 2019

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.