Go ahead. Ask me.
Did you know that blindness is one of the most-feared disabilities? Because of that, over the years, I’ve learned that people have lots of questions for me, some that they’re willing to ask, and some that they are just too shy too put out there. So just in case you’re wondering . . .
Were you born blind?
No, I lost my sight in 1985, when I was 26 years old.
How did you lose your sight?
I have had type 1 diabetes since I was seven. A disease called diabetic retinopathy caused my blindness.
Is blindness common in diabetics?
Most people don’t know it, but diabetes is the leading cause of new blindness in working-age adults.
You said you are married. Had you already lost your sight when you got married?
No. Mike Knezovich and I were on our honeymoon in Edinburgh when I first started seeing spots. Once we were back home from Scotland, we connected with specialists in Chicago through a NIH study on retinopathy in Type 1 diabetics. The two of us spent our first year of marriage driving (well, Mike did the driving!) back and forth from Champaign to Chicago, Illinois for weekly treatments.
We all did all we could to save my eyesight. Unfortunately, nothing worked.
How did life change after that?
Oh, in so many ways. Adapting to blindness was like going through adolescence all over again. I felt very uncertain of myself, but wanted very badly to look competent in front of my peers. Hard to do while learning new ways to read, write, cook, dress, and get around on my own.
My first book, Long Time, No See covers those early years of blindness.
So you already have a memoir published?
What made you decide to write another one?
I didn’t set out to write a second memoir. My first draft of Writing Out Loud was a “how-to” book about memoir writing. I wrote it when I was only leading one class a week, and I based each chapter on what went on in class that week –Week One, Week Two, and so on. Readers were encouraged to work on the same assignments I gave in class and get their memoirs off the ground.
So why didn’t you just go with that?
Publishers and agents were intrigued by how I manage to lead my classes without being able to see, but they were convinced the world didn’t need another “Get Started on Your Memoir” book. The rejection letters said the thing that makes my story interesting is the ways I manage to live in a big city and lead these classes without being able to see. “Write about that.”
So I did. And while I was at it I started leading three additional weekly memoir classes. The National Endowment for the Arts awarded me a writing fellowship in 2013, and I used that time to polish my new manuscript about my experiences working with all those wonderful writers – and my life outside of class, too.
So what makes Writing Out Loud different from your first memoir, then?
Long Time, No See is about adapting to blindness. Writing Out Loud is about living with blindness – how writing and teaching memoir classes helps me lead a full, creative and pleasurable life after losing my sight.
What was one of the hardest things about losing your sight?
When I lost my sight, I lost my job.
Isn’t that illegal?
That all happened in 1985, five years before the Americans with Disabilities Act was passed.
But you’re working now, right?
Oh, yes. The work – and social – life I’ve created in Chicago, where we live now, was the impetus for my new book.
What is your job?
Well, really, I have three:
- I lead four weekly memoir-writing classes for older adults in Chicago
- I work part-time for Easterseals Headquarters moderating their national blog, and
- I travel all over the country with my Seeing Eye dog to give presentations about blindness, adapting to change, accessibility, diversity, service dogs and . . . writing.
When did your writing life start?
After I started modeling nude for art students back in the late 90s.
Wait a minute. Did you say something about modeling nude?
Yeah, I started doing that when I turned forty. I modeled for drawing classes at University of Illinois, and at the local community college, too.
What ever made you decide to become a nude model?
I was out of work back then and pretty bummed out about it. This was, excuse the blindness pun, in the dark ages, before classified ads were available online. So on Sunday nights Mike would read the want ads out loud for me. When he came to the one about needing nude models, he read it out loud as a sort of joke. I memorized the phone number without telling him and called for an audition.
Did you like your job modeling?
Not exactly. It was too quiet a job for me, and my muscles didn’t like staying still for so long.
So why’d you keep doing it?
I couldn’t find any other work, and I realized early on that modeling nude for university art students might just get my writing life off the ground. I used that quiet time to put together my very first published essay. I composed it in my head and then typed it into my talking computer the minute I got home.
What was the essay about?
Modeling nude, of course! “Nude Modeling: Going In Blind” was picked up by “Alternet” and published in alternative newspapers all over the country.
Do you still model?
Nope. I don’t have time!
What do you mean, you don’t have time?
Did you not see that question about my having three jobs?! My first book came out in 2003, the same year we moved from Urbana, Illinois to Chicago. My life has been pretty full with working, teaching, and writing ever since.
You keep referring to your first book, and now, your third book. What came second?
My second book, Safe and Sound, is a children’s book, and ever since it was published in 2007, I’ve been visiting schools pretty regularly to talk with kids about disability, trust, adapting to change, bonding with animals, service dogs, teamwork, diversity and dealing with bullying.
Do you just write books, or do you write other stuff, too?
I’ve written for National Public Radio, Chicago Public Radio, and National Geographic School Publishing. I’ve had articles in Woman’s Day, the Chicago Tribune, the Chicago Tribune Sunday Magazine, The New York Daily News, The Writer, Business Law Today, Dogs for Kids, Dog Fancy and The Bark.
How do you write without being able to see? Do you write in Braille?
No. I write using a computer equipped with a screen reader.
How does a computer like that work?
A speech synthesizer parrots the letters as I type. That way I can hear and fix my typos as I go along. I can manipulate the keys to make the synthesizer read a page of type by word, by line, or by paragraph when I want to check for spelling and grammar.
Does your keyboard have Braille on it?
Braille templates do exist, and some blind people put them over their regular computer keyboard. I’ve never used one myself. Most keyboards come with a dot or indentation on the ”f” key and the “j” keys that seem to be enough of a guide for me. I learned to type when I was in high school and could still see, so if I feel for the indentations on those letters to make sure I’m on the home keys, I can take it from there. It helps that the synthesizer parrots everything I type – I can hear when I’m making mistakes.
Do you and Mike have any children?
Yes, but he isn’t a kid anymore. Gus was born in 1986, a year after I’d lost my sight.
How did Gus react to your blindness?
You know, I’m not really sure Gus realizes I’m blind. Gus was born with disabilities of his own, the result of a genetic defect.
Was that because of your diabetes?
No, Gus’ genetic defect had nothing to do with my Type 1 diabetes or blindness; it was just a fluke of nature. His condition is called Trisomy 12p. It’s kind of like Down Syndrome, but more severe, and not as common.
And what are his disabilities?
Gus needs help dressing, eating, toileting and bathing. He can crawl and sometimes uses a walker to get around. Otherwise, he travels by wheelchair. He loves to hear music – he laughs and claps his hands whenever he does – and when he lived with us, he learned how to get himself up on our piano bench to let us know he wanted me to play.
So he doesn’t live with you now?
Gus lived with us until he was 16. Now he lives in a group home in Wisconsin that is owned and managed by Bethesda Lutheran Communities. We miss him, but we visit him often and we know he’s in good hands.
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Have more questions? Ask away!