What I learned from a wheelchair

My first day of college, I saw a guy in wheelchair, in the desert heat, wearing heavy leather gloves. I'm a blurter. What goes in my brain tens to come out my mouth, so I asked him, "Why are you wearing gloves in this heat?" That's how I got to know Rob, who had rheumatoid arthritis, and who explained that your hands get very dirty when you use them to work a wheelchair, because those wheels are rotating from the dirt to your hand. Even if your chair has that silver wheel inside the dirt-rolling wheel, you still make contact, and within a very limited time, hands get as dirty as Rob's leather gloves. 

I knew from reading and from Rob and from other folk I've known in chairs, that people relate to “short” as "this is a child to be ignored." They talk to the person pushing the wheelchair and not the person in it, and because most of us are not as blurty as I am, they don't ask guys in wheelchairs why they're wearing gloves, they just flush and look away, embarrassed to be caught staring. I thought I was pretty savvy about the hassles involved. 

Then, I got to spend time in a wheelchair myself. Not the kind of time where you can put your foot down and move yourself around, or where you can hop out of the chair if you need to. Nope, I was not allowed to put an ounce of weight on one foot or I might permanently screw up the bones. That's when I learned things beyond what my friend, Rob, taught me. 

1) Being in a wheelchair is lonely. 

These days, people don't ignore wheelchair folk in quite the same way Rob described.  They help them. "May I help you?" "How can I help you?" And then, they turn back and talk to that standing person next to them, because, of course, you've either been helped or you don't need help and that's the only reason most people can think of to interact with someone in a wheelchair. 

So: I hereby resolve even more to speak to people in a wheelchair. The weather, the length of the line we're waiting in, the kind of chair they have, there's lots of stuff I can use to initiate a conversation, even if I don't know them. And if I do, I can manage to spend time and be friendly. 

2) It's almost impossible to go to a public bathroom in a wheelchair.

When I'm walking around, I barely notice that heavy public restroom door. Imagine trying to open it in a wheelchair. One handed, a manual wheelchair will turn in a circle. But, the bathroom door must be pushed open with one hand. So you push with one hand while wheeling in a circle. You're not yet trying to aim at the opening, because the door is so heavy, it pushes you back. You push yourself forward. The door opens a little, but remember, you can't just wedge your foot in, so pushing in your crazy circle, inching your way in while being constantly shoved back, you finally get in, (after you have almost peed your pants.) This part usually takes about ten, sweaty, frustrating minutes. Minimum. 

Except, oops, the hallway into the bathroom is at an angle, so while the door is pushing you one way, you have to not only push forward, but then push at an angle. Add another five to ten minutes. 

Still, finally, you get in, and into the handicapped stall, and here it's easy, because there's a railing and some space. So, this is maybe another five minutes. 

Now, however, you have to get out of the bathroom, and that, my friends, is nearly impossible. Because with one hand, you have to yank that heavy door *toward* you, which means roll the one wheel away from the door, so you are still rolling in a circle, but you bang the wall, because you are approaching said door from the oblique angle required by the turns of the inner bathroom hallway. And of course, the door's heavy weight is pulling you forward so even if you manage to open it a crack, it will quickly shut again, pulling you with it. Twice, getting out of a public restroom took me twenty minutes. And I am a healthy person with some upper body strength, not elderly and frail. The only saving grace was imagining it as a Monty Python wheelchair routine. 

So: if see someone in a manual wheelchair going toward a bathroom, I will not only open the door for them on the way in, but offer to wait until they are done so they can actually leave the bathroom someday, and not get petrified in there. 

Or, even better, we can all advocate for a change in public bathroom design. Let's say--requiring an automatic door! That would make all the difference. 

3) You can't go through a buffet line in a manual wheelchair without dousing your lap with food. Remember the one hand rule? You can't move in a straight line in a manual wheelchair unless you have both hands on the wheels. 

Since there's no place to put your plate except your sloping lap, this one is obvious. But--now that I am a grownup, I like getting my own food. I don't want to have to say, "No, more, no, less, no that one. I want to get it myself, if possible. 

So, from now on, I will not ignore someone in a wheelchair when I approach a buffet.  assume someone would like me to prepare a plate for them. I will instead offer to carry their plate while they fill it. Or ask if they would like me to fill it. Either way, I will give them grownup options if possible. 

4) At our neighborhood block party, everyone left the street to stand in small, chatting circles on the grass beside the sidewalk. Our block does not have front driveways. I could not even get on the sidewalk, let alone push the wheelchair onto the grass. Nobody noticed that I was isolated in my chair. These kind, caring neighbors accidentally created community without the person in the wheelchair. And I had to ask someone to help me get food from the buffet. 

5) This part, I don't really know how to say, because it's specific to our family, which includes a special needs kid whose needs don't obviously show but always make us late, no matter how we prepare. Telling me to arrive early to make arrangements isn't going to help. I simply can't manage it if I want my child to join us (which I do.) 

On the most important religious holiday of the year, we arrived a bit late, but in enough time to hear the praying, except--the row set aside for handicapped people was literally behind a giant curtain set up to make the space more intimate for those who were there. And the usher wouldn't open the curtain while certain prayers were going on, as a sign of respect for those prayers. Thus, we got to spend the most important prayer of the year, literally, shut off from the rest of the congregation, behind a curtain. I know and respect the usher, and I knew, rationally that there are reasons for not opening the curtain, and I knew that the congregation does not revolve around me, that they would expect me to arrive early with a disability, that they can't help it if my child has another disability that so delayed us. Still, I have rarely felt so helpless or so shamed. I spent those most important communal prayers in isolation, in anger and in tears. 

6) I know that being in a wheelchair creates very real medical concerns, like dangerous pressure sores. And there are other, minor things that we, as a people, could work to change: older elevators that have buttons too high for a person in a wheelchair to reach, restaurant menus posted above a sitting person's vision, ice cream counters too high to allow you to actually order ice cream. 

Another suggestion is that someone could set up a non-profit to produce an inexpensive 28 inch wheelchair that can be raised to a standing position and lowered to sitting easily by hand. (They are working on such a critter for the VA.) And then someone could set up a foundation that would donate them to people who can't afford one themselves. 

In the meantime, I plan to be aware of those in rolling chairs, and to work even harder to include them in my world and in the world around us. 

Facing Rejection As An Artist--(Trying this again so you can read it!)

My new friend on She Writes, Emily Lackey, wrote a grippingly honest blog post about her struggles with rejection and how it was affecting her ability to write. 

Many writers responded with much wisdom. This has inspired me to post again on my blog, after, oh, okay, months. I'm putting together what I said to Emily, who I compliment for her bravery in putting her fears out there. I told her about my friend, the painter from Marin, who got an assignment from her teacher at art school to go to the galleries around them and come back with ten rejections.




My friend came back to class thrilled: the first four galleries she asked all wanted to show her work.  




The teacher sent her out again. She hadn't done the assignment. She had to keep going until she got those ten rejections. Getting them, getting used to rejections, was part of her job. My friend is a terrific painter. It took her awhile to find ten galleries who would not show her work. Thus, she learned that rejection is just a part of her job. 




Of course, the publishing world today is far tougher than being a painter in Marin County. And life is more complicated than a quick story on a blog. There may be people in our lives who intentionally or unintentionally undermine us. For those we are stuck with, I suggest we develop mental translators that turn their words into: "I'm worried I will lose you if you become successful and I lose control over you." For those we are not, this might be time for a good house-cleaning. And to those who undermine yet are no longer with us, except for the versions we carry in our own heads, I recommend we say, with love, "Hello, how nice to see you again, Mom/Ex-husband/ex-best friend. Lovely to have this mental visit. Okay, bye now." 




Another wise author, Debra Borchert, also from SheWrites, responded to Emily's cry of pain by reminding us all that rejection hurts. She says we should go ahead and feel that pain, instead of rushing past it. I fully agree. I do my best to teach my kids (and myself) that disappointment is a fact of life and should be honored with our sadness and anger. Life hurts. When my kid loses a helium balloon at the park, I worry about the birds, and hold my child while they cry, and say no thank you to the well-meaning folk who want to give them another to make up for the loss. I believe that the knowledge that we should let our selves feel that is terribly liberating. Before I was cast in my most important role as an actor, I heard those around me try to tell themselves that they didn't want to care to much in case they didn't get the part. I told myself that I was going to go to bed for a week if I lost this part, but by God, I was going to really want it. Really want it, like gut level, got to have this, want it. (And the experience itself was one of those disasters that caused everyone involved years of pain. But that's a different story.) 


There's another thing for me to remember. I write because if I don't, I get nutty. My family can tell when I'm not doing daily writing work. So can I. I said in response to Emily's post that I don't write because I crave success, and that's partly true. I do want success. I want the financial freedom to travel for the research I need to do for the next novel. I want my work to create catharsis that opens minds and informs. Most of all, I am chomping at the bit to take what I have learned and become a voice for empathy and insight into the world. 




But the truth is, I write because I have to. I said that to my husband on our very first date, that I might never be financially successful, but I would always be a writer. Look, it's like this: two days ago, I taught my littlest an old Viola Spolin theater game. You immerse yourself in an animal of someone else's choice. You put yourself into that animal's body and persona, their essence. Gradually, you pull the animal back to a person who is doing an activity, also given by an outsider. My kid stunned me with the marvelous giraffe lady she created, the slow motions, the lanky gait, blinky eyes, the mouth chewing sideways as she spoke.




We create, we humans, because we must. It's part of our genetic makeup. The market place, all the rest of it, that's just a kind of illusion layered over the creativity. Yes, it's important, I suppose, to share our work, to bring it back from the hunt and do the animal dance around our communal fire-pit. The community, too, needs that shared animal dance, doesn't it? They need our stories to translate the dark around us. We all need to laugh at what frightens us most, to find ways to handle our envy of those who have what we long for, to learn how to survive the rush of love and manage the keening harshness of loss. Those of us who are no longer tribal might not get to actually sit around a communal fire-pit. That's what movies and theater and novels and short stories and music and painting are all about. I think that's important to remember, too. Our work does serve a purpose. 




Even without that, though, I would write. I write because I have to. It's how I make sense of the world and has been since my first journal when I was eight. I write, because, like a miniature God, I need to recreate the world around me to better understand it. 




What the heck happened? Or The Creativity Mystery--where does it come from and where does it go?

Last week, I picked up a project I last worked on in 2005--yes, nine years ago. It's a novel, a screwball comedy. I already had outline and in 2005, it appears, I was laying flesh on those bones.

I had invented (I guess) two co-workers for my heroine, and a bunch of At-Risk students for her improv class. The writing snapped and sizzled on the page. The characters are all complicated and unexpected. They're all very real, in the midst of the pacing of a screwball comedy. I like them all, and I care deeply about the kids, who are profoundly troubled, (as they should be.)

And then, Page 94. The draft ends. What happens next? What was I doing with those intriguing teenaged characters? What about my heroine's colleagues? I know my heroine's plot outline, more or less, but what happens to the rest of them?

I have no idea. I made them up, nine years ago,  put them on the page in an interesting way, and then, I can't remember if I switched to working on another project or I got pregnant and was too tired to write, or I was too busy chasing my Turbo Child, or what. All I know is that I have no idea. Nor do I know where I did the research that makes these kids and their improv class (taught by my heroine) come leaping off the page.

What do I do now?

And why can't remember writing them? I wasn't possessed, I don't have amnesia. I am not losing my mind, so far as I know. What a fascinating thing, the creative process. I must have read something stunning about teaching At Risk Kids improvisational theater, and I just poured them onto the page, leaving no traces of them on my brain nine years later.

Has anybody else had the same experience?

Facing Rejection as an Artist

My new friend on She Writes, Emily Lackey, wrote a grippingly honest blog post about her struggles with rejection and how it was affecting her ability to write. 

Many writers responded with much wisdom. This has inspired me to post again on my blog, after, oh, okay, months. I'm putting together what I said to Emily, who I compliment for her bravery in putting her fears out there. I told her about my friend, the painter from Marin, who got an assignment from her teacher at art school to go to the galleries around them and come back with ten rejections.

My friend came back to class thrilled: the first four galleries she asked all wanted to show her work.  

The teacher sent her out again. She hadn't done the assignment. She had to keep going until she got those ten rejections. Getting them, getting used to rejections, was part of her job. My friend is a terrific painter. It took her awhile to find ten galleries who would not show her work. Thus, she learned that rejection is just a part of her job. 

Of course, the publishing world today is far tougher than being a painter in Marin County. And life is more complicated than a quick story on a blog. There may be people in our lives who intentionally or unintentionally undermine us. For those we are stuck with, I suggest we develop mental translators that turn their words into: "I'm worried I will lose you if you become successful and I lose control over you." For those we are not, this might be time for a good house-cleaning. And to those who undermine yet are no longer with us, except for the versions we carry in our own heads, I recommend we say, with love, "Hello, how nice to see you again, Mom/Ex-husband/ex-best friend. Lovely to have this mental visit. Okay, bye now." 

Another wise author, Debra Borchert, also from SheWrites, responded to Emily's cry of pain by reminding us all that rejection hurts. She says we should go ahead and feel that pain, instead of rushing past it. I fully agree. I do my best to teach my kids (and myself) that disappointment is a fact of life and should be honored with our sadness and anger. Life hurts. When my kid loses a helium balloon at the park, I worry about the birds, and hold my child while they cry, and say no thank you to the well-meaning folk who want to give them another to make up for the loss. I believe that the knowledge that we should let our selves feel that is terribly liberating. Before I was cast in my most important role as an actor, I heard those around me try to tell themselves that they didn't want to care to much in case they didn't get the part. I told myself that I was going to go to bed for a week if I lost this part, but by God, I was going to really want it. Really want it, like gut level, got to have this, want it. (And the experience itself was one of those disasters that caused everyone involved years of pain. But that's a different story.) 

There's another thing for me to remember. I write because if I don't, I get nutty. My family can tell when I'm not doing daily writing work. So can I. I said in response to Emily's post that I don't write because I crave success, and that's partly true. I do want success. I want the financial freedom to travel for the research I need to do for the next novel. I want my work to create catharsis that opens minds and informs. Most of all, I am chomping at the bit to take what I have learned and become a voice for empathy and insight into the world. 

But the truth is, I write because I have to. I said that to my husband on our very first date, that I might never be financially successful, but I would always be a writer. Look, it's like this: two days ago, I taught my littlest an old Viola Spolin theater game. You immerse yourself in an animal of someone else's choice. You put yourself into that animal's body and persona, their essence. Gradually, you pull the animal back to a person who is doing an activity, also given by an outsider. My kid stunned me with the marvelous giraffe lady she created, the slow motions, the lanky gait, blinky eyes, the mouth chewing sideways as she spoke.

We create, we humans, because we must. It's part of our genetic makeup. The market place, all the rest of it, that's just a kind of illusion layered over the creativity. Yes, it's important, I suppose, to share our work, to bring it back from the hunt and do the animal dance around our communal fire-pit. The community, too, needs that shared animal dance, doesn't it? They need our stories to translate the dark around us. We all need to laugh at what frightens us most, to find ways to handle our envy of those who have what we long for, to learn how to survive the rush of love and manage the keening harshness of loss. Those of us who are no longer tribal might not get to actually sit around a communal fire-pit. That's what movies and theater and novels and short stories and music and painting are all about. I think that's important to remember, too. Our work does serve a purpose. 

Even without that, though, I would write. I write because I have to. It's how I make sense of the world and has been since my first journal when I was eight. I write, because, like a miniature God, I need to recreate the world around me to better understand it. 

Let's all think about this some more. 

About The Color of Safety

Several years ago, we lived in a house much like this one, (but not quite as fancy) in West Adams, which at that time was a mostly middle class African-American enclave somewhat West of USC, in the heart of Los Angeles. We--white and Jewish, clinging to Middle Class by our fingernails--were fortunate to have found that particular neighborhood at that particular time.
The area had been built around the turn of the 20th century and ranged from mansions to more-than-comfortable homes. By the Great Depression, the fancy part of town had moved North and West to Country Club Park. During those tough years of the 1930's, many of the great homes of West Adams took in boarders while paint faded on their mammoth walls.
By 1947 and 48, the first Negroes (as they were then called in polite company) moved in. These were the educated and the well-to-do--lawyers, insurance company owners, teachers, nurses, doctors, some of them movie stars on the order of Hattie McDaniels, the first African-American to win an Oscar. That didn't matter.  The impolite response was burned crosses, minor riots and white flight. Soon the neighborhood was almost completely Black with a smattering of Asian, mostly Japanese.


But it turned out, our block had someone of color who had moved in long before 1947. According a neighbor down the street, her great-aunt had built their sweet Craftsman cottage in 1908, when that branch of the family was passing for white. Successfully--Nonny (not her real name) even mentioned one of them who was an Admiral. In the Navy. Yup.

Her story started me on the long road to writing my novel, "The Color of Safety," which is about a hundred years in one house in West Adams, and which is in part about someone in the first half of the last century who is "passing for white," as that slip across the color line is called.

But trying to research what it was like to pass proved tough. Oh, there are literary sources. Charles W. Chestnutt wrote of men who succeeded and women who were punished for crossing the line. Nella Larsen, who was scarred emotionally when her mother crossed over, leaving her behind,  wrote of passing in terms that screamed, "Danger, Danger." Chester Himes wrote a painfully hilarious almost-sketch of a story (Dirty Deceivers, 1948) in which a couple, both passing, believe they have married "up"(i.e. white) only discover that their beloved wife/husband is--yes--just a person of color, passing, like they are. Though at first, they are delighted--it turns out they are even distantly related--within paragraphs, they feel cheated that they didn't manage to catch someone 100% white. The very short story ends with them suing for divorce. So, yes, those literary sources certainly gave me insight, particularly Himes'.

But I wanted details. After all, if you're going to write a novel, you have to know about, oh, smells, sounds, tastes. What you're seeking are those perfect minutia, that pebble in the shoe that makes each moment come alive as someone reads it. Those--those just weren't there.

So I started calling around academia, history departments, looking for any kind of oral histories. And I ran, slam, into a stone wall. Sure, okay, I get it, white woman doing research on passing? In most well-to-do families, the idea of passing was a shameful thing. Only classless people would not want to be wealthy and African-American.

And today, it really carries a sense of shame, as if these people didn't realize that Black is Beautiful, without much understanding of what folks in the past were really up against.

So what I heard was, "Oh, well, that sort of thing really didn't happen. I mean, people would pass to sit in the front of the street car, or maybe to get a job, but then they'd come home and within a block, they could go back to being Negro again, return to the family, relax."

"But," I'd say, "What about what Walter White said in his autobiography?" (Ironically titled, "A Man Called White" since White was then the blue-eyed, blond-haired, fair-skinned president of the NAACP.) "In 1948, White wrote: 'Every year approximately twelve thousand white-skinned Negroes disappear—people whose absence cannot be explained by death or emigration. Nearly every one of the fourteen million discernible Negroes in the United States knows at least one member of his race who is “passing”—the magic word which means that some Negroes can get by as whites, men and women who have decided that they will be happier and more successful if they flee from the proscription and humiliation which the American color line imposes on them."

"And," I'd say, "What about Melba Pattilo Beals? You remember, she was one of the kids who integrated Little Rock High school. She wrote in her absolutely brilliant memoir, 'White is a State of Mind,' about her fair-skinned cousin, Griffin, who went north to college and on his first day, fell madly in love with a white woman, love at first sight. Knowing she was from Alabama, he was instantly sure she would never marry him if she knew he was Negro, so he called his mother and said he was going to live his life white.  And now this cousin, Griffin, was a sheriff in a small southern town by day and a member of the Klan by night. He had to be, or he would have been found out (and couldn't have maintained his place in Alabama society.) And he was calling to warn Beals' parents that the Klan was offering a reward to anybody to kill all five of the children integrating the school."

That was when my academics would start to talk. Not that they had much to offer. Because how do you get oral histories of people who have vanished into the whitewashed woodwork? Even Shirlee Taylor Haizlip couldn't do it. Taylor Haizlip, in case you missed the Oprah episodes like I did (because my kids leave me no time to watch TV) by dint of persistence and energy, found and reconnected with her aunt who had left the ranks of "Colored" around 1916. But--and for me, this was a huge but--though she talked with her new-found "white" cousins, Taylor Haizlip was too kind to ask her eighty-some-year-old aunt the questions that would have come out of me like a hail storm, rat-a-tat-a. Not. . .not ethical questions, no. I understand that there was--and probably still is--a tangible need to pass. After all, I am a blonde Jew who could easily pass for English or Swedish and I am married to the child of Holocaust survivors. Of the very few Jewish children who survived the Holocaust, almost all of them were able to pass. If those eleven cousins of my husband who died during WWII had been fair enough (and lucky enough--at least two of them were blond, so we're told by those who still miss them) and if parents' Polish or French had been good enough, and if all the stars had aligned enough, they might have survived the war.

What haunted me, though, was the idea that this cousin of Beals, Griffin, was not only a sheriff, but had joined the Klan. But of course, he would have to, wouldn't he? If you were passing, you'd have to be the worst of them. And you'd have to keep an eye on them, the way Griffin did for his little cousin, Melba, back in Little Rock. You'd have to brag about your pure white sheet and trash-talk Niggers--and maybe even lynch a few--in order to survive.

And then there was the rest of Walter White's introduction to his autobiography: "Often these emigrants have success in business, the professions, the arts and sciences. Some of them have married white people, lived happily with them, and produced families. Sometimes they tell their husbands and wives of their Negro blood, sometimes not. Who are they? Mostly people of no great importance, but some of them prominent figures, including a few members of Congress, certain writers, and several organizers of movements to “keep the Negroes and other minorities in their places.” Some of the most vehement public haters of Negroes are themselves secretly Negroes.”

My (Jewish) mother always said to me, "Be careful about marrying out of faith. Because if you don't teach your children to be proud of being Jewish, the world will teach them to be ashamed of it. And if you scratch the grandchild of someone who converted to Christianity, you're likely to find an anti-Semite." Of course,  Mom's rule doesn't hold true for all the world, but there is something twisting in  having to hide who you are. (And one other Jewish girl in my class (there were only about seven in my whole school) the one whose Dad had married a non-Jew, used to wear a cross on a chain around her neck, and pretend nobody at her house at matza around Easter)

And if you have to hide who you are in a world that holds who you are in contempt, then who do you become? What happens to you on the outside? What happens to you on the inside? Do you become that mouth-foaming, gay-hating politician who plays footsie in the Minneapolis airport? Do you become Griffin, the Klan Klegal, who is secretly black?

That was the origin of my complicated novel, the Color of Safety. I hope to lead you on the journey of discovery along with me as I finish the last section of the book.

Sakki Selznick