Semantics

Two weeks ago in my Social Work class, a fellow student challenged my use of the word "incarceration" to describe the history of people with mental illness. I was surprised by his exception to my language because expose's like Geraldo Rivera's 1972 documentary about Willowbrook, a state school for people with mental disabilities in Staten Island, New York, established a clear history of such incarceration. More recently, in 2014, The Treatment Advocacy Center reported that 15 percent of people in jails and 20 percent of those in state prisons had a serious mental illness. At the time, that meant that 356,000 people in jails and prisons had mental illness. 

My classmate spoke from the point of view of a clinician who had had a frustrating day, when he followed a client with mental illness around trying to make sure the client didn't hurt himself or someone else. He told us that he had called the police and someone else, too. 

He was "challenging the narrative" that he said prevented us as a society from putting people in a place where they couldn't get out so that we could take of them. 

This classmate talked a lot about ways that people with mental illness are different than "we" are. I stopped talking once he started, but I typed a few things he said: “People with mental illness don’t see the world we see….They don’t see the world like we do." Another classmate pointed out the assumptions he was making about who was in the room and the danger of creating an "us" and "them." 

After class, a classmate a with mental illness diagnosis told me how painful this had been. I talked with the instructor and asked her to address the able-ism, something I have witnessed before in this school and have heard stories about but have never seen or heard about the able-ism being addressed. 

Before class the next week, the student who had divided us all into a camp that didn't include people with mental illnesses sought me out because he wanted to understand my thinking.  He asked about what had been so offensive. We had a good conversation, and I had a lot of respect for his initiative. He said that he would apologize to the class, and when we began class he did apologize. 

One student offered that he didn't think it was "that bad," and when it seemed that no one else would speak up, I offered that I had found it offensive. This group of students doesn't know me well enough to know that I am seldom offended. In fact, I don't think I've said the words, "I thought that was offensive" in this school before. But I now feel discounted as a person who is too sensitive. I don't know if that's true. That's just how I feel. 

Later in the conversation, another student said that he didn't think it was a big deal either, and he just wanted the class to stay on topic. (There aren't many guys in the class: maybe six and fifteen women, so it's interesting to me that mostly the guys were speaking up. I don't know what others felt, but I felt like we were choosing teams for pick-up basketball and no one wanted to be on my team.)

Because I'm taking classes at a different pace than most students, this group of students is new to me though they know each other. There's an odd vibe in the room, a simmering tension, that has some source I'm not aware of. 

The experience of what felt like others discounting a painful experience reaffirmed for me the importance of the work I've been doing the last few years to try to increase the teaching and understanding of people with disabilities in this school. It reminded me of the importance of language and of the way that language both reveals how we think and shapes how we think. 

Sunday, when Barb, a lay leader in our church, talked about language, her comments resonated with me. She made me think that I've been making assumptions about being unable to help people who are homeless because there are so many things I can't do since my surgery. Her talk made me think about things I might do, like lead discussion groups or writing groups that help form communities of support. After all, I did these groups for years with teenagers (the groups were called classes), and now I do groups with elders, most of them experiencing memory loss. 

Barb's talk gave me a framework for understanding my own experience and hope for new understanding--my own and others'. She spoke about language and compassion and being. 

Barb said that I could share her comments on this blog. I'll bet you'll find them brilliant and compelling like I did.

Suffering, Compassion, and the English Language by Barb

I teach English to a man twice a week, and about a year ago when I first started meeting with him I noticed he used the word “suffering” a lot.

For instance he said, “A woman at the park threw Frisbee and it hit my son. Accident. She kept saying ‘Oh, sorry, sorry’—she was really suffering.”

Once when I mentioned to him that I was really bad at some things—like dancing—he nodded sympathetically and said, “Oh, yes, you suffer!”

After a while I figured out that he understood that “to suffer” means “to feel bad,” and because there are so many ways to feel bad, there were many ways to suffer.

I must say though, the whole thing made me feel differently about suffering—I suddenly saw that everyone suffers. I became aware of the many small aches we all carry around all the time: emotional and social pain, feelings of regret, meanness, sadness, inadequacy—we do all suffer. This idea made me feel more at one with my fellow suffering humans. Instead of a divide between those who don’t suffer and those who do, I felt that I was a part of a world of suffering souls, and each person’s individual suffering then becomes a matter of kind, and degree.

Now, some of us certainly suffer a lot. I stay overnight at a homeless shelter twice a month, and the guests at the shelter—they lack a home, yes, but also are sometimes hungry, wet, or cold, often have health problems, are estranged from their family, and they have little support or encouragement from friends. Not to mention all the other kinds of human pain that I mentioned before, that we all carry around. So, I want to be compassionate—and “compassion” means to “suffer with”—

so, how do I do that, exactly?

---

Well, teaching English without formal training as I am, I’ve had to teach myself about English grammar, and so I’ve been doing some reading. One interesting essay I read said that, “The English sentence demands a subject, even when there is none.” For instance, to describe the weather these past two months, the past continuous verb “was raining” would be perfectly clear to us all, but grammar demands we say, “It was raining.” It. Nothing happens in an English sentence without something, or someone, doing it. Every effect demands an agent, a cause—someone to blame.

The essay also said that doing is important in English. When we meet someone, we say “How do you do?” and then we ask, “What do you do?” On the altar, we say, “I do!” — And when we see a problem, we look for something to do about it. Our grammar compels us to act in a linear way: effect/cause, problem/solution. This framework can be useful, but it’s NOT a universal way of seeing the world—not even necessarily Christian (Jesus, after all, didn’t speak English) and the essay argues that the grammar of our English language reinforces linear thinking and actually changes the way we think and act.

So sitting at the homeless shelter on a morning, having coffee with a fellow suffering person, there’s that impulse to find the cause of the suffering. Who or what is to blame for this person’s situation? Likewise, there’s a temptation to search for a solution to their problems—suggest a fix, a better course of action. But these linear impulses are not the most compassionate acts.

A weary soul embarking on another hard day might just need a simple moment of safety, warmth, and comfort. So, I stifle my questions and suggestions. Instead I offer up an undemanding silence. Oh, stories bubble up within it sometimes; I might hear about hard times, big plans, small disappointments—but often, morning’s quiet instead.

The profound thing I have discovered is, that it is in this small quiet moment, that a space is made for the presence of Christ. Here we are, two people—two suffering souls—drinking coffee, remarking on the rain, and God sits with us! Jesus knew how to heal with a bit of bread, a touch to the eyes, by calling someone by their own name. And in that friendly threesome, I discover that Christ heals us both together, my own small sufferings also, and we both walk away changed and warmed by the moment. That’s compassion.

So, today my prayer for All-Of-Us-Who-Suffer is that we seek out compassionate moments with other suffering souls, and that we too may discover Christ sitting there with us.

Immanuel, Alleluia, Amen!

As Barb said, her understanding of the way that grammar frames the way we talk isn't necessarily a Christian understanding. Some of my best teachers in this arena are of other faiths or agnostic or atheist, but this vision does offer for me some understanding of the way I've always thought and the ways I'm learning to challenge those ways of thinking.

Once again, brain tumors have been my teachers, and my fellow students and Barb are my teachers, too. 

And once again, I feel lucky for new ways of seeing the world. I hope that's not irritating. 

Love to you. 

Art in the Seattle Times

Thursday I visited Seattle City Hall’s first floor gallery to see about fifty works of art by people with Alzheimer’s and Dementia.  The show’s opening of “The Art of Alzheimer's: The Artist Within” was so popular that it was sometimes difficult for me, walking with my cane, to move safely to each work, but I managed, and it was worth the effort. The art attests to brilliance that expresses itself more effectively in images than in words, the vision that people with Alzheimer’s have to share, and the role of art in building community by allowing us to understand one another in new ways.

Did today’s Seattle Times NWArts&Life section run a review of this exhibit? No. Instead, the section ran on its front page a column called “The List” in which Seattle Times staff stereotyped people who bug them on the bus: The Yakker, The Bus Hiker, and The Pothead. Because journalists at their best help us to understand peoples’ stories we might otherwise misunderstand, I was shocked by the shallowness and laziness of this “story.” The list’s assumptions about people, the article’s implication that there wasn’t worthwhile art to write about, and the editor’s apparent belief that such a story deserved a front page spot offended me.

I ride the bus multiple times a day and offer these three categories to The Seattle Times staff categories: 

The Giver

In December on the #43, a man who wore the worn jeans and rugged beard of someone who was homeless got on the bus and said to a man who looked like he might have immigrated from Africa: “I love that coat! It looks so warm!” The rider, in his long black coat with a faux fur-lined hood, said, “You can have it. Where are you getting off?” And the man who had initiated the conversation replied, “Are you serious? Thanks so much, man! I’ll get off wherever you. I sleep in my van, and it was cold last night. That coat will really help.”

The Driver

In the fall, on the #48, three teenage sisters from Ethiopia gathered around the bus driver to ask how to get home. Their English wasn’t strong, and this was their first day out on their own, but their father had written the address (and the home phone number) on a piece of paper for them. After another rider called the father and figured out that he had left off the “NE” part of the address, the driver pulled over, motioned for them to cross the street, and tried to communicate how they would get home. Because I sit in the front seat for people with disabilities, I often witness how helpful and patient drivers generally are with people who are confused or lost.

The Social Network

A few years ago, a woman boarded the #3 near Harborview Hospital one evening, distraught because she was suicidal and the psychiatric unit had released her. Other riders listened to her story and told her about resources that she could access. As we rode the bus, she called and got a bed in a place accessible by bus. The community also told her how to get there.

I hope in the future the Arts&Life writers will share the stories behind their stereotypes and will work harder to report on meaningful stories from Seattle’s art community.

I have written a shorter version of this letter to them. I wonder if they’ll read it.

My Story: Coming Out to my Family

A friend of Dad’s contacted him recently because her adult son has just come out as a gay man, and I came out to Dad when I was thirty. I don’t know what they talked about, but I imagine he talked about his experience. I thought it might be helpful for her—and maybe others—for me to share my coming out story in relationship to my parents, so here it is. (I’ll send the link to Dad to share with her as well.)

I came out as a lesbian to myself when I was thirty years old and at the end of an unhappy marriage. It was a horrible time for me, much more difficult than my brain tumors. I had spent my whole life trying to please my parents, thinking their ways would lead to a fulfilling life, so coming out to myself challenged that idea and let me know that I hadn’t even let myself know who I was.

When I came out to some of my local friends, one who was already out as a lesbian responded, “Congratulations.” I thought the response to something that was making me so miserable was an odd one, (but now I think it’s the right one.)

In my journal during those first years, I wrote about the emotional pain of my divorce and coming out:

I was torn apart—or felt like it. I lost a significant amount of weight (30 pounds?) quickly—and not because I wasn’t eating but because my body was literally eating away at itself with the adrenaline of grief and anxiety. I slept little, had to limit my exercise (yoga twice a day, bicycling twice a day) because I knew that too much exercise was unhealthy.

…

I could hardly function at my sister’s wedding—seeing her go into a life that I had imagined for myself—and seeing clearly that it was right for her and had never been right for me.... I felt small and angry that I was being asked to be invisible when I felt I had been invisible for so long.

…

I felt like I was being punished but not sure what I had done wrong—married when I was gay? (but I didn’t know…), come out? (but that was the truth), not come out before? (but I didn’t know…), … let the world see my pain? (but how not to do that…). So what did I do wrong? Was I just born wrong?...

…

I feel like I’m holding my breath for something to happen, some enlightenment, some luck that will help me create my own meaning. But how do I get there? I just do not know. And I am so tired of the ache, like my lower ribs are being pulled together, my stomach and throat and chest taut.

…

And then there’s the everyday pain here in the fallen Eden…Oh God. Remind me that all of life is grace. Let me respond in gratitude.

…

“Strictly speaking, we do not make decisions. Decisions make us.” –Jose Saramago, All the Names, p. 29

Did I make these decisions, or did they make me? I suppose we look as best and as honestly as we can at the options and the likely way they will make us—and then at some point we make a decision, and that decision seldom makes us in the way we envisioned. And that’s just how it is….

…

I’m so tired. Ooff. Air out of a tire. Body as a heavy sack. Head like the clapper in a bell.

…

I wonder how much of my life I’m avoiding depression or weariness or being a disappointment and how much of my life I’m living joyfully. I think it’s time to live joyfully, not dutifully.

…

Sometimes I feel like I’m fading, turning invisible, see-through, like I need to concentrate to maintain my presence, my self. Where am I disappearing to?

…

“Pessimism is cowardice.” –Dubois

…

“There are no answers. Only choices.” –Solaris

…

If sadness could talk, what would it say? “I’m here because I’m always here, and I’m as old as time. I flow like a river, or rock like an old woman knitting in a chair, but whatever you do or feel I flow on. I rock on. I am the pain of human suffering, caused by human cruelty or the whims of weather and tide. I am a part of what it means to be.” … What does it mean to live—not die—by this river of sadness—to pitch a tent and notice the beauty.... What does it mean to come to peace with this sadness?

…

I have things to learn that will make this miserable journey worthwhile.

I came out to my family because truth and integrity are values we share, and I knew I wanted to have real relationships with them, which I couldn’t do if I were hiding who I was. When I came out, I wrote letters to my family one day, mailing them all at the same time. I didn’t want them to share their first reactions with me, so I figured letters would give them time to react in my presence when they were ready to.

Mom called immediately, saying she would always love me, and Dad wasn’t ready to talk to me yet. Mom came to visit soon thereafter and met Ann, who is still my partner (now wife, according to the state) twenty years later. My siblings also responded immediately, communicating love and support: a letter from my brother and an envelope from my sister with news reports of all the celebrities (like Ellen DeGeneres) coming out at the time. On the outside of the envelope was a brief note: “You’re in.”

Dad and I wrote letters back and forth for a year and a half but didn’t really talk, except for me to ask to speak to Mom when he answered the phone. (This was before caller identification.) The letters were generally angry and aired all of the grievances of my life. Though the communication was hard, it was honest and it kept us in relationship.

After my original letters to the family, the four of them and my brother’s best friend Ken went out for dinner. They avoided talking about me until Sister Jen started talking about African Americans and the Civil Rights Movement, code for talking about me. Mom said that she didn’t think Sister Jen was talking about the Civil Rights Movement, and they talked about me. I don’t know what they said, but Ken said there was lots of gnashing of teeth, and everyone but him cried. Apparently the wait staff was perplexed about what to do.

Neither Mom nor Dad wanted me to come out to my grandmothers, but both grandmothers let me know in Southern code that they understood the situation and loved me, perhaps even approved with more enthusiasm than my parents could understand.

After a year and a half, Dad and I started talking again.

I can’t remember what happened for a while. Maybe I went home without Ann for holidays or maybe I didn’t go home. As time progressed, my parents went out to dinner with Little Brother Matt, who told them that if they were going to have a relationship with me, they were going to have to invite Ann into their lives.

For years after that, Ann was welcomed to family events: weddings, holidays, and beach trips.

When I was diagnosed with my first brain tumor thirteen years later, I believe my reaction grew from having lived through the very difficult time of coming out. On that day, I wrote in my journal:

Today I learned I have a brain tumor…. The odd thing is that the primary emotion I’ve felt in response has been the great sense of how lucky I am: luck to love and by loved by Ann, to have a warm comfortable home and health insurance, lucky to have loving friends and family, to have a job I love with students who are so charming and interesting, colleagues who are so dedicated and fun…lucky to get to see flowers bloom and to eat chocolate chip milkshakes.

It wasn’t until I had brain surgery when I was 43 that my parents finally saw how real and loving Ann’s and my relationship is. Ann is now a genuine part of the family, and I believe the whole family loves her and sees her as one of us.

This was probably the greatest gift of my brain tumors. (Yes, there are others.)

Love to you and your family as you experience this difficult time.

Mary