Dialogues on Disability

 

 

ON April 4^th I joined two other speakers in a Dialogues Conference at Chatham University on disability issues. One of the presenters was a deaf English professor from Gallaudet and the other, a woman dealing with chronic pain, also an English professor and head of an MFA program at Fairfield College. After a dinner where we interacted with the many students, we each read from our work, then held an hour-long panel discussion.

We discussed obstacles and opportunities our disabilities brought to the literary and academic world, changes in attitudes, technology, and quality of life over the years, experiences in a publishing world trying to increase the number of authentic voices, and books that were getting it “right.”

Chris Heuer who seemed equal stand-up comic and professor and writer, argued for deafness being no more a problem than baldness. He spoke, too, of paternalism, still a problem. Sonya Huber pointed to our inattention to language, calling something a lame proposal. She suggested that often the nondisabled unconsciously see our disability and expand its power to include a slower functioning brain. People without disability casually tell us how to handle our disability. I spoke of progress, giving my days as a grad student, taking exams on a ladies’ room floor, because no professor ever managed to find my requested empty room so I could use my reader and, ahem, typewriter (which I’d carried 8 blocks) without disturbing other class members.

Chatham students, several dealing with disability personally, then asked many questions, and the moderator, the associate director of Chatham’s MFA program, asked what universities could do to be more helpful. We supported so much that is done today, on-campus centers for disability awareness and accommodation, and special opportunities for discussion, like this one. Simply ask questions to find out if your students have specific needs. One professor said a student with hearing impairment asked after class if she could use caption for the power point from then on.

“Just bringing disability to the forefront is important,” I said. “A famous history of blindness, The Unseen Minority, describes a difficulty still experienced today. Among the minority groups, the disabled are more overlooked. Publishers still produce books with stereotypes and mistakes.”

And as Sonya said, the general public still uses careless language, “deaf to his faults” or “blind to her needs,” continuing the unaffected negative connotation of disability.

 

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First Encounters with Death

Our son-in-law’s mother died last week after a prolonged illness, saddening the whole family and her many friends. Our grandkids understand that they will never see her again, but our six-year-old granddaughter is really struggling with it. Her reaction reminds me of my son’s response at the same age to the death of my mother.

Joel suddenly began to think he’d broken a bone if he merely bumped his arm or leg. He concocted slings and crutches and seemed very preoccupied with his body’s intactness. When he carried these concerns into his elementary school his first day back, we decided to confront it. Joel must think he is going to die, and sooner, not later.

“When Nonnie died,” I began, “it made me really face that I was going to die someday, too.”

Six-year-old Joel burst into tears. “And you’re going to die before me, Mommy.”

Aha. He wasn’t fussing about his own death, but my husband’s and mine.

“Oh, honey,” I said. “I’m not going to die till you’re 35.”

And like magic, his symptoms disappeared.

Our granddaughter seems shaken up, too, by her first experience with death. She’s asking lots of questions, pointing to photos of my parents and my husband’s parents. “Do you miss them, Nini?”

But she’s also as cranky and fearful as she is curious.

And I find myself wondering if I’m so different from these six-year-olds as this senior person confronting life’s major challenges, our big mysteries.

 

 

 

New Instagram Star

Having a guide dog can be bad for the ego. He gets all the attention. Really! Passersby call, “You are so beautiful” or “Aren’t you magnificent!”

There was an incident many years ago when I deluded myself, thinking the man coming toward me, saying, “You are just gorgeous” was addressing me.

“Thank you,” I replied, beaming.

“Oh,” said he, “I was talking to your dog.”

Big wake-up call. For 40 years I’ve been resigned to living in my dog’s shadow. Resigned isn’t the equivalent of reconciled, of course, and I still experience painful reminders.

During a recent visit with my brother, I met his countless friends and later asked, “So were your friends impressed with your astounding sister and brother-in-law?”

“No,” he said. “They only talked about Dave!”

And I have to admit that Dave’s many assets show themselves to me again and again, especially his crazy, beautiful nature. So, I’m taking advantage of his charisma and launching an Instagram page, @DavetheGuideDog.

Since I’m about 40% competent using Facebook, WordPress, and the iPhone, this is no small undertaking. Truly, there must be better uses of my time, children to tutor, hungry to feed. But I’m breathing deeply and trying to keep up with the sighties in the world who do all this digital stuff with aplomb. And so far, it’s been fun.

 

What? Gutting the ADA?

Warning: this could sound political, but I’m hoping my concern cuts across party lines. I just learned that some US Congress members have voted to gut the Americans with Disabilities Act. This law affects an unbelievable 55 million American citizens and protects them from former discrimination.

Examples: After I became blind, I found a teaching job at the rehab agency that had trained me and was paid less than my colleagues—all of them sighted (despite my teaching experience of 3 years which surpassed many of theirs). But I needed the job. As I taught the Braille classes, I discovered that one 16-year-old boy could read every single letter he felt, but couldn’t translate them into words. The boy had never learned to read. So, I spent my lunch hours teaching him and got him to a second-grade reading level. When he was to move to a vocational facility where he’d still have Braille, I outlined how the teacher could continue to help him with reading. The agency head refused to send along my outline, calling it “company property,” so I quit. Two weeks later this agency head showed up at my apartment at 9 p.m., even though he was married and my father’s age. I didn’t admit him, but didn’t feel that I could report him to the board either. My only blind work experience had been under his supervision, and I might need a job recommendation.

Over the 40 plus years that I’ve been Deaf-blind, I learned how underemployed many disabled people were. I heard of landlords who wouldn’t rent to someone whose right hand didn’t work. I knew people whose job interviews were cancelled once the interviewer learned they were blind.

So much changed after 1990 when this law was enacted. If this concerns you, please e-mail your congress person. And thanks.

Where is Love?

 

Valentine’s Day. Eighteen instances of shootings on school properties in the first 45 days of 2018has probably sunk us all in the US today. And we all feel desperate for solutions, for answers to why this is happening so epidemically in our country. Several years ago I was onstage with a father of a young boy killed in the Sandyhook shooting. No matter where the teenage and adult audience and those of us about to speak sat on our political affiliations, we shed tears. Talk about the needless death of a six-year-old, and empathy overwhelms a place.

A dear friend at a recent conference for writers heard a panel of agents saying that a quality missing enormously in the books submitted this past year was love. There were books on anger on revenge, on sorrow, on hopelessness, but few on love.

A touching song in the musical Oliver is “Where is Love.” People feel it’s an angry time, a time to pop off at will. “Pugilistic,” commentators say, which is a fun word, but an ugly one, too.

A person told me recently that he’d accused someone of being an “ablest.” Now that was a surprisingly new label for me, who would qualify as someone being discriminated against in that terminology. I found myself thinking (ah, and not saying), “why would you feel you had to speak out and enlighten the person in that manner?” I think it’s okay to question someone if you feel he’s being unfair or prejudiced, but isn’t there a more productive way to do it?

So how do we find the love in these days of negativity and upheaval, where people think that there’s no human-made climate change, but there are usable nuclear weapons, where people can get their hands on AR15s, where on a mini scale people are bullied or subjected to put-downs? Spouses, kids, grandkids, books, music, coffee?

I find it also helps to establish some answer to a huge mystery for me—why am I here? Part of the answer for me came from an elderly priest who helped with my sister’s renewal of wedding vows. “Just do the small good you can in your circle.”

And finding people who are motivated to improve the world in some small ways for future generations—fuels and inspires me, and, on days like today, gives the love.

 

The heart against itself

 

I think it was Lord Byron who spoke about the “heart against itself,” a phenomenon that is one of the most painful, yet profound experiences a person can undergo. That phrase captures the emotional tangle I’ve felt the past 10 days involving confronting oneself, one’s failings, one’s blind spots (a phrase I’d like to find a synonym for). The first reaction is defense, then recognition and chagrin, finally gratitude for the insight.

In the first instance I made someone mad, and she rightfully let me know it, then (wrongfully) rolled her eyes to the others in the group. “Foul!” Can’t hear those eyes rolling, unless a friend “rats” to me. So, though I wronged, I felt vindicated because of her low blow…until I felt the same impulse in me in another situation to “sin” again. Aha! Sally, face it. You’re rude.

The second instance of Sally’s heart against itself came in a manuscript review. Many know I’ve been writing (for years) a biography about a blind man who also happened to be African-American. It’s changed genres several times, and finally I thought I’d found the genre that best captures the man. Now I’ve recently cast myself as a sensitivity reader for topics and characters who are blind and Deaf-blind. Reason: so many mistakes even in award-winning books. So, though I think anyone can write about anybody, empathy doesn’t come without a lot of work. So a lovely African-American friend read the ms and forthrightly pointed out possible erroneous conclusions that could be drawn in a few situations in the book. Ah, heart against itself— “but that’s not what I meant,” and “that’s exactly what the 6 volumes of research by the African-American who devoted her life’s work to the subject said…”

How I hate to feel stupid or worse, insensitive! How 13 I still am despite all the mistakes I make! But these are the growing pains I heard about in 8^th grade, but these are emotional. I just didn’t expect them to last this long!

“Nothing But the Truth” by Avi

My husband is an adulterous reader, always having a number one book going with many runners-ups, a wife and many mistresses. As he devoured a biography of Sir Walter Scott, for instance, he had frequent sessions with a history of the gun powder plot, a children’s book from the ‘50s that told the story of the human body through the metaphor of a city and its services, and eight to ten more. He came to the end of them all with full appreciation and recall, often introducing me to brief glimpses of their more interesting parts. One of the more recent mistresses Bob had was with award-winning children’s author, Avi’s 1992 book, Nothing but the Truth. During prep for my Y.A. class, I went to bed with this wonderful book more than a few times myself. This “documentary novel” is sooooo apt for our time, though text messages would replace memos, I suppose. The book captures the penchant for so many to fail to accept personal responsibility, blame others, and welcome all authority figures around the protagonist to follow their own selfish motives. Result: failure to find positive solutions. Oh Avi, I wish everyone would read your remarkable book!