Value of Being Among the Disabled

 

Probably 95% of my friends are not blind, deaf, or disabled, although they are slowing down with age, the great disabler. Many wear hearing aids now, as I do; some even use canes, as I also do.  But I wish that I had more regular interaction with others who have dealt with physical impairment for decades.  I almost always benefit from conversations with these kindred spirits.

Mostly we laugh about shared frustrations, like trying to find our turn speaking in a group of sighted people. I’m convinced there are nonverbal cues about who has the next turn to offer an opinion.  I shouldn’t complain, because I am hardly diffident.  I get my oar in plenty.  But I often find I begin to speak exactly when someone else has begun.  In one of my regular groups, where I’m the only Deaf-Blindie, I have this experience half the time I open my mouth.  No one in the group notices, which could be a message to me, either that I’m not terribly fascinating or that I’m too talkative.

Another experience we blind people laugh about is something we share with African-Americans and others of color—we all look alike.  In my church there’s another blind woman.  We’re similar in age, but different in every other aspect of appearance.  Yet, often church members attribute something I’ve said to her, and vice versa.  It’s pretty hilarious.

In these discussions with blind friends, I do encounter small differences in our experiences that set me to thinking. a blind digital guru, for instance, mentioned that he was tall, and I said, “I know.  Bob told me.”

“How did he happen to tell you that?” the friend asked.

“I usually ask for physical descriptions of people,” I answered.

“Really,” he said. “Well, I guess that shouldn’t surprise me; you saw till you were 26.  But born blind, I would never think to ask about someone’s appearance.”

Yet, one’s height, weight, choice of dress, and style reflect a lot of information about a person—even her lack of interest in appearance. The conversation made me think of other visual reflections of people that I don’t ask much about, like the home they’ve chosen, their decorative sense, their choice of automobile, the photos or art work they display.  I learn practical aspects of their homes—where the bathroom is, or the sharp-edged coffee table after my shin is lurking.  Such conversations prompt me to ask more questions about the visuals in people’s lives.

And always the encounters with others who are blind or disabled lead me to and from my comfort zone.

 

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Meaningful Lives In two months, two extraordinary women have died from my Tuesday night writing group. First was Tina Zubek, a children’s librarian, who was only 60 years old. Tina had just reduced her work hours at the Carnegie library so that she could have more writing time, and the decision paid off. She received recognition twice at our local SCBWI conference for manuscripts with promise. Sadly, she didn’t have time to revise and market these two books. She developed a very rare neurological condition and died five weeks later. Tina had also attended my church, an interracial congregation formed in 1968 and held the co-chair of our council. She pushed tirelessly for issues of hunger and more equal educational opportunity. She did the work of her faith, not just espousing it. She left a husband and 25-year-old son and a reputation in our writing group for being the Roger Ebert (sp) of books. Francesca Compozzi Alvin, 68, a retired Pittsburgh public school teacher, had breast cancer in 1994. After a mastectomy she seemed cancer-free. Francesca joined my Tuesday group at its inception in 2002. She wrote picture books and early middle grade novels. Regrettably, her cancer returned soon after joining, and Francesca and her doctor found one chemo drug after another to keep the cancer from spreading. Her daughter, Sara-Anne, and son-in-law, Justin, had a baby boy, Cash, whom Francesca called her “motivator.” Francesca and her husband, Lou, served every Christmas Day at the Ronald McDonald house. I met her in late 2001 at a Hunger Action Coalition fund-raiser, where she and her first graders were receiving an award. Every week these public school kids brought in canned food to donate. In our group Francesca was seen as our bright light, our sunbeam, bringing pastries or lovely soft scarves for every member. This writing group and my Wednesday night writing group have built a beautiful bond over the years. They offer compliments and suggestions to each member as she reads with a gentleness, but candor. Despite the age range from about 87 down to 35, the group members connect with such respect, admiration, and lack of competition. Clearly, our Tuesday group is in mourning. But I think of these two women, whom I loved. I feel that their lives and contributions were cut short. But I ask myself about the value of a life, any life, and its meaning. Both these women made those around them better people. They exuded the qualities I think represent the best ethics, humility, other-directedness, hard work, acceptance, forgiveness, love, and the common good. R.I.P., dear friends.

In two months, two extraordinary women have died from my Tuesday night writing group.  First was Tina Zubek, a children’s librarian, who was only 60 years old.  Tina had just reduced her work hours at the Carnegie library so that she could have more writing time, and the decision paid off.  She received recognition twice at our local SCBWI conference for manuscripts with promise.  Sadly, she didn’t have time to revise and market these two books.  She developed a very rare neurological condition and died five weeks later.  Tina had also attended my church, an interracial congregation formed in 1968 and held the co-chair of our council.  She pushed tirelessly for issues of hunger and more equal educational opportunity.  She did the work of her faith, not just espousing it.  She left a husband and 25-year-old son and a reputation in our writing group for being the Roger Ebert (sp) of books.

Francesca Compozzi Alvin, 68, a retired Pittsburgh public school teacher, had breast cancer in 1994.  After a mastectomy she seemed cancer-free.  Francesca joined my Tuesday group at its inception in 2002.  She wrote picture books and early middle grade novels.  Regrettably, her cancer returned soon after joining, and Francesca and her doctor found one chemo drug after another to keep the cancer from spreading.  Her daughter, Sara-Anne, and son-in-law, Justin, had a baby boy, Cash, whom Francesca called her “motivator.”   Francesca and her husband, Lou, served every Christmas Day at the Ronald McDonald house.  I met her in late 2001 at a Hunger Action Coalition fund-raiser, where she and her first graders were receiving an award.  Every week these public school kids brought in canned food to donate.  In our group Francesca was seen as our bright light, our sunbeam, bringing pastries or lovely soft scarves for every member.

This writing group and my Wednesday night writing group have built a beautiful bond over the years.  They offer compliments and suggestions to each member as she reads with a gentleness, but candor.  Despite the age range from about 87 down to 35, the group members connect with such respect, admiration, and lack of competition.  Clearly, our Tuesday group is in mourning.

But I think of these two women, whom I loved.  I feel that their lives and contributions were cut short.  But I ask myself about the value of a life, any life, and its meaning.  Both these women made those around them better people.  They exuded the qualities I think represent the best ethics, humility, other-directedness, hard work, acceptance, forgiveness, love, and the common good.  R.I.P., dear friends.

 

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Sloppy Generalizations The award-winning writer, George Saunders, speaks of all writing being about “specifics.” During my Wednesday night writing group, we found ourselves discussing the generic, ordinary description, as opposed to one that’s detailed, but targeted to character, plot, setting, etc. I think of how quickly we flip to generalizations in the rhetoric of the dreadful current events, of the presidential and other political campaigns in progress now, or in regress, if that’s the opposite. I’m afraid I’m as guilty as anyone, reverting to the general, though I’d rather avoid knee-jerk reactions. I’m convinced that writing helps our sloppy thinking, so that we remember that characters and events/experiences are nuanced, elaborate, conflicting. I want to be more open to expectation of interactions that are more empathic and open. In my circle, especially with family, where I expect party-line utterance, thinking I know the views, I don’t engage. I keep interaction short and off-substance or make jokes. I need to challenge my stereotypes, my bete-noirs. And possibly, although this scares me to death because I hate conflict, maybe I need to commit to more open conversation. It might lead to more complexity and more real communication. The award-winning writer, George Saunders, speaks of all writing being about “specifics.” During my Wednesday night writing group, we found ourselves discussing the generic, ordinary description, as opposed to one that’s detailed, but targeted to character, plot, setting, etc. I think of how quickly we flip to generalizations in the rhetoric of the dreadful current events, of the presidential and other political campaigns in progress now, or in regress, if that’s the opposite. I’m afraid I’m as guilty as anyone, reverting to the general, though I’d rather avoid knee-jerk reactions. I’m convinced that writing helps our sloppy thinking, so that we remember that characters and events/experiences are nuanced, elaborate, conflicting. I want to be more open to expectation of interactions that are more empathic and open. In my circle, especially with family, where I expect party-line utterance, thinking I know the views, I don’t engage. I keep interaction short and off-substance or make jokes. I need to challenge my stereotypes, my bete-noirs. And possibly, although this scares me to death because I hate conflict, maybe I need to commit to more open conversation. It might lead to more complexity and more real communication.

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Minority status

            When I became blind, I also lost a love relationship and my emotionally-satisfying work—kind of a triple crown.  In rehab I learned that the loss of sight was even fraught with more loss.  Techniques of daily living proved to be quickly “in-the-face” deficits, practical and enormously frustrating….how to pick out my clothes, to do my hair, to identify and negotiate food from plate to mouth, to step out of my house safely.  Rehab addressed these basics immediately, allowing the more subtle psychological losses to surface, the sense of social adequacy and lowered self-esteem.    What I only learned much later was that I’d also lost status.  I was no longer in the majority.  I was now a member of a minority group.

It didn’t strike me in the beginning, but as I moved through my first year as a blind person, and talked to people in other minority groups, I began to catalog some similarities.  There were stereotypes.  Not only would blind people be depressed and pretty helpless, they would also be good—no swearing, no drinking, no mischief or humor.    We would marry only another blind person and we’d know most of the blind in the country, not just the vicinity.  In the classroom or meeting, we were generally the only member of that particular minority  attending.  We represented      that group.  We were the ambassadors.  I never knew how much I’d taken to heart the words of the rehab director when I graduated, “Go and be good missionaries for the blind.”  I color my hair and clean my house excessively to be a good missionary.

What I didn’t understand until years later, though, is how much I’d identify with others in minority groups, who also experienced discrimination, whose personalities were also dominated by their minority status.  (Once in a bar when I was single, a guy putting moves on me whispered to a friend, “I’ve never had sex with a blind woman.”  Not sure if he ever managed it, but I didn’t help him achieve that.)

What I realize is that I empathize with all members of minority groups.  I immediately cut them slack, because they’ve known struggle and have had to work so much harder to keep up with those in the majority.  This doesn’t translate into a perfect connection to all, but it does mean an openness, a willingness.  And it does mean that when something like the recent Orlando shootings happens, I share the horror of the whole country, but possibly even something individual and personal.

And although it’s become almost a cliché to be grateful for one’s difficulties/challenges, or at least a cliché in my story, I am grateful to have been dropped into a minority group. And so I list the names of the victims of June 12 to say my individual, personal goodbye.

 

 

Stanley Almodovar III, 23 years old

Amanda Alvear, 25 years old

Oscar A Aracena-Montero, 26 years old

Rodolfo Ayala-Ayala, 33 years old

Antonio Davon Brown, 29 years old

Darryl Roman Burt II, 29 years old

Angel L. Candelario-Padro, 28 years old

Juan Chevez-Martinez, 25 years old

Luis Daniel Conde, 39 years old

Cory James Connell, 21 years old

Tevin Eugene Crosby, 25 years old

Deonka Deidra Drayton, 32 years old

Simon Adrian Carrillo Fernandez, 31 years old

Leroy Valentin Fernandez, 25 years old

Mercedez Marisol Flores, 26 years old

Peter O. Gonzalez-Cruz, 22 years old

Juan Ramon Guerrero, 22 years old

Paul Terrell Henry, 41 years old

Frank Hernandez, 27 years old

Miguel Angel Honorato, 30 years old

Javier Jorge-Reyes, 40 years old

Jason Benjamin Josaphat, 19 years old

Eddie Jamoldroy Justice, 30 years old

Anthony Luis Laureanodisla, 25 years old

Christopher Andrew Leinonen, 32 years old

Alejandro Barrios Martinez, 21 years old

Brenda Lee Marquez McCool, 49 years old

Gilberto Ramon Silva Menendez, 25 years old

Kimberly Morris, 37 years old

Akyra Monet Murray, 18 years old

Luis Omar Ocasio-Capo, 20 years old

Geraldo A. Ortiz-Jimenez, 25 years old

Eric Ivan Ortiz-Rivera, 36 years old

Joel Rayon Paniagua, 32 years old

Jean Carlos Mendez Perez, 35 years old

Enrique L. Rios, Jr., 25 years old

Jean C. Nives Rodriguez, 27 years old

Xavier Emmanuel Serrano Rosado, 35 years old

Christopher Joseph Sanfeliz, 24 years old

Yilmary Rodriguez Solivan, 24 years old

Edward Sotomayor Jr., 34 years old

Shane Evan Tomlinson, 33 years old

Martin Benitez Torres, 33 years old

Jonathan Antonio Camuy Vega, 24 years old

Juan P. Rivera Velazquez, 37 years old

Luis S. Vielma, 22 years old

Franky Jimmy Dejesus Velazquez, 50 years old

Luis Daniel Wilson-Leon, 37 years old

Jerald Arthur Wright, 31 years old

 

 

 

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Dave’s and My first anniversary

Yesterday marked the anniversary of Dave’s and my first date.  We were equally excited, although I think I kept my enthusiasm more in check .  He ran back and forth between the door to my Seeing Eye dorm room and me, whimpering, which I’ve learned since is his essential mode of communication.  It can be louder or quieter, more or less desperate, more or less constant, demanding, and pretty effective in getting his point across.  Usually the vocalization means he wants to play and I should be quick about it.  Almost as often, it means that he has lost his tennis ball, and I should be quick about recovering it, then playing with him.

Dave came home to Pittsburgh with giardia, a condition, if spelled correctly, means frequent and abundant diarrhea.  Using a new guide dog and any guide dog, for that matter, is a challenge, but one with a penchant for pooping unsubstantially is particularly problematic.  Downtown Pittsburgh in the center of prime shopping—three plastic bags might not suffice.  I needn’t say more.

After expensive testing and meds, Dave finally recovered, but by late August he complained of his first stomach ache.  Result: more costly tests which were all negative.

“Do you think he’s depressed?” an instructor at Seeing Eye asked.

I had to smile.  Dave was not inclined to depression.  Rather, he was probably the most playful of my five shepherds, finding every Kong, rope, bone, even his huge dog pillows as objects for games of keep-away.  Still once a week, his stomach gurgled, and this time his whimper was pitiful, expressing pain.  He lay on his large pillow like a lump and didn’t eat a kernel of food.

Finally in March, when Dave’s tummy troubles began happening every five days, we submitted him to more tests.  Again, all was negative, but the vet suggested we try ZD, a dry food for dogs with food allergies.  Since, Dave has only been ill once, over a worrisome three-day period.

Seeing Eye is not to blame for his giardia.  They’d had an outbreak in the kennel and Dave and all their dogs had been treated.  From what I understand, Dave was the lone pooch to have a relapse.  And giardia occurs, apparently, in all kennels, animal shelters, etc.

This past week Dave, Bob, and I met Leslie and Jeremy and Raya and Clydie at a wooded lake in eastern Pa.  Dave celebrated his new-found health, his anniversary, and anything worth observing.  He tore back and forth across the lawn of the large cabin, one of only three on this lake, found a path to a little beach, returned when called, and splashed into the water.  I’d come to believe that German shepherds were not drawn to the water.  But Dave plunged right in.  The true test will come next week to see whether or not he’s got the affinity for water his blind owner has.  Dave will be meeting the Atlantic Ocean in the state of Maine.  Brrrrr!

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Nuance, please!

I just listened to the fourth and last movie in the “Hunger Games” series and now want to reread the trilogy’s last book again, or at least skim it .  Like most readers, I didn’t love the third book, and I think this is generally true of trilogies.  Writers often submit a book and are asked by publishers to make it a trilogy.  This is a dream realized, of course, but often the writer has painted herself into various corners that are difficult to escape.  Or fans are so hungry, excuse the pun, for the sequel that they force the author to rush a book to press before it’s ready/worthy.

But I do think the movie truly rushed this film because I generally liked the earlier films.  I mean, the books  themselves angered me in their obvious pander, appealing to the ubiquitous cliffhanger…allow the action plot to end, but do not resolve the emotional one till the last rebel battle.  But formulas aside, the first two books and film adaptations at least didn’t direct me into mock mode.

Talk about lack of nuance….”I’m more humane than you are.”

I recently read an interview with a poet, Mary Jo Bang, in the April issue of the writer where she recommends reading in all fields, endlessly, in science, psychology, history, religion.  She feels that that improves her poetry, the learning of specifics, but also the acquisition of language in those subjects.  She feels it gives her poems speakers and insights that are deeper and more substantive, and always more nuanced.   Wow, could the MockinjayIv have benefited from that approach!

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Writers that Speak Truth powerfully

 

Over coffee this morning Bob talked about a book he serendipitously found as we snooped the City lights book store in san Francisco. The book was written by a person who owned one of the lords of Northumberland’s houses in England.  Unimportant to most people, this factoid is of great interest to Bob who is researching the household accounts of the Percy families for dramatic records.  This is what has taken Bob to England for three years running and for another near month this summer, testing my independence sorely.   He hadn’t known this owner was a writer, and the book he’s written about poets of WWI era is proving to be a complete treasure for him.

Still awake?

He read me the Wilfred Owen poem again, “Dolce et Decorum Est,” and I was so struck by what Owen calls the “big lie,” as he portrays the English soldiers running from the gas, so sleep-deprived to be almost more a detriment to themselves than that enemy gas.

Bob and I have traveled in mid-March to early April to visit kids and grandkids in Philadelphia and San Francisco and had occasion to read several remarkable writers, not poets like Owen, but definitely of his caliber, though not his contemporaries.  Two memoirists, Brian Stevenson and Ta-nihisi Coates, have two books out that will probably be on the 100 best books of the 21st century lists.  Both men  are African-American, one, Brian, a lawyer and Ta-nihisi a journalist, write and speak with a lyricism that’s almost the stuff of Horace and Owen.  They define injustice to be sure, but offer such inspiration and hope and an impetus to roll up one’s sleeves to seek justice.  Both books, Stevenson’s Just Mercy and Coates’ Between the World and me, turn even the most addicted fiction reader to nonfiction.

                I’ve learned recently that many of us writers send off our nonfiction books with vital information and intriguing worlds to reveal to readers, but in a manner that is often flat and remote.  Particularly those of who write nonfiction for children send off books that are deemed by editors and agents as “institutional,” which is not  a compliment.  The schools and libraries will buy them for the substantive and very real information, and kids will plow through them for book reports.  We forget about character and story and offer the information in a “kiss of death” way.

                Stevenson and Coates remind us that nonfiction is every bit as page-turning and heart-swelling as any novel.  I want to buy their books for everyone and reread them often.

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