The orientation packet they sent out for the Summer Military Sport Camp I’m volunteering at includes a primer on disability etiquette. Among other things, the two-page document suggests that if the situation is appropriate, we should “strike up a conversation and include the person in whatever is going on, just as you would do for an average-looking person.” I’ve read documents like this before (I work part-time at Easter Seals Headquarters, and they feature a similar list of guidelines on their web site). I am sure the people who devise these guidelines mean well, but do they realize that their well-intentioned lists might leave a person with a disability feeling, well, like they’re talking to a person who is nervous about talking to them?

The antidote? A list of do’s and don’ts that turns the notion of disability etiquette on its head. I appreciated this parody so much when I first read it that I thought the time was right to resurrect it.

What To Do when You Meet a Sighted Person
People who use their eyes to acquire information about the world are called sighted people or “people who are sighted.” Legal “sight” means any visual acuity greater than 20/200 in the better eye without correction or an angle of vision wider than 20 degrees. Sighted people enjoy rich, full, lives, as they work, play, and raise families. They run businesses, hold public offices, and teach your children.

Sighted people cannot function well in low lighting conditions and are usually helpless in total darkness. Their homes are usually brightly lit at great expense, as are businesses that cater to the sighted consumer.

How Can I Best Communicate with Sighted People?
Sighted people are accustomed to viewing the world in visual terms. This means that in many situations, they will not be able to communicate orally and may resort to pointing or other gesturing. They may also use subtle facial expressions to convey feelings in social situations. Calmly alert the sighted person to his or her surroundings by speaking slowly, in a normal tone of voice. There is no need to raise your voice when addressing a sighted person.

How Do Sighted People Get Around?
People who are sighted may walk or ride public transportation, but most choose to travel long distances by operating their own motor vehicles, usually one passenger to a car. They have gone through many hours of extensive training to learn the rules of the road in order to further their independence. Once that road to freedom has been mastered, sighted people earn a legal classification and a driver’s license, which allows them to operate a private vehicle relatively safely and independently.

How Can I Assist a Sighted Person?
At times, sighted people may need help finding things, especially when operating a motor vehicle. Your advance knowledge of routes and landmarks, particularly bumps in the road, turns, and traffic lights, will assist the “driver” in finding the way quickly and easily. Your knowledge of building layouts can also assist the sighted person in navigating complex shopping malls and offices. Sighted people tend to be very proud and will not ask directly for assistance. Be gentle, yet firm.

How Do Sighted People Read?Sighted people read via a system called “print.” Print is a series of images drawn in a two-dimensional plane. Because the person who is sighted relies exclusively on visual information, his or her attention span tends to fade quickly when reading long texts. People who are sighted generally have a poorly developed sense of touch. Braille is completely foreign to the sighted person and he or she will take longer to learn the code and be severely limited by his or her existing visual senses.

How Do Sighted People Use Computers?
Computer information is presented to sighted people in a “Graphical User Interface” or GUI. Sighted people often suffer from hand-eye coordination problems. To accommodate this difficulty, people who are sighted use a “mouse,” a handy device that slides along the desk top to save confusing keystrokes. With one button, the sighted person can move around his or her computer screen quickly and easily.
People who are sighted are not accustomed to synthetic speech and may have great difficulty understanding even the clearest synthesizer. Be patient and be prepared to explain many times how your computer equipment works.

How Can I Support a Sighted Person?
People who are sighted do not want your charity. They want to live, work and play alongside you on an equal basis. The best thing you can do to support sighted people in your community is to open yourself to their world. These citizens are vital contributing members of the community, real people with thoughts and feelings, hopes and dreams, and a story to tell. Take a sighted person to lunch today!

The seniors in my memoir classes have clever ways of letting me know when they disapprove of a writing topic. Wanda groaned when I assigned “in-laws,” and she returned the next week with a colorful essay about a second cousin once removed who’d spent much of his adult life in and out of prison. I could hear her mischievous grin as she finished reading her essay, plopped her paper on the table and declared, “he was an outlaw!” Janie wasn’t crazy about the topic, either. She came back with a piece she wrote about her decision to forego law school after college. She did not end up, ahem, in law.

Myrna’s mother-in-law Hedwig is on the left. That’s Henry, Hedwig’s son and Myrna’s husband, on the right. And that’s baby Elizabeth being held by Hedwig. Taken in 1962.

Myrna Knepler was one of the very, very, few students who opted to use the assignment to write about her mother-in law.

Myrna’s Husband Henry was only 16 when he said goodbye to his mother and father in Vienna and boarded the Kindertransport (children’s transport), the effort that saved 10,000 Jewish children from the Holocaust. Henry’s father died in the Auschwitz concentration camp. His mother — Hedwig — survived by hiding In an unheated cabin in the Vienna woods, owned by an anti-Nazi family who sheltered her there. Hedwig would not reunite with Henry, her only child, until he was 24 years old.

Myrna would get to know Hedwig Knepler a decade later, after marrying Henry. From Myrna’s essay:

Although she had proved both mental and physical sturdiness, she was thin and bent in a way that made her seem fragile and untouchable. Certainly her life experience was beyond anything I knew, in some ways so terrible I was afraid to touch it.

Moreover, I sensed the tension between her and my husband, her son. I, his new, much younger wife, wanted above all to please him. He loved his mother, but was troubled by what seemed to be her almost obsessive concern for him, a concern more appropriate to the mother of a young boy, than to a balding assistant professor in his late thirties.

Myrna wrote that her conversations with her mother-in-law were awkward until Myrna and Henry had their first daughter, Elizabeth.

Then for the six months between Liz’s birth and Hedwig’s death, talk was easier, focused on our mutual love for and wonder at this new creature, the grandchild she never expected to have.

Hedwig died in 1962, leaving Myrna and Henry to sort through a box of letters Hedwig and Henry had exchanged before and after the war. The letters were written in German (a language Myrna does not know well) and stored in their attic for years. The only time Myrna and her husband Henry opened the cardboard box together, they closed it up right away and put it back on the shelf. The material inside was too painful for Henry to read.

Henry died in 1999, and before his death, when he was too ill to deal with the letters himself, Myrna realized that they were now her responsibility. She unpacked nearly one thousand pages of letters — all typed single-spaced and to the edge of the page — and started sorting them by date to donate to the United States Holocaust Memorial Museum in Washington, D.C. In exchange, the museum would translate and make copies for Myrna and her daughters.

The translated letters trickled back to Myrna over a span of six years, and after reading them all Myrna was able to piece together stories of how her mother-in-law helped a brother immigrate safely to Argentina. She read heartbreaking details of her mother-in-law’s attempts to help her mother and aunt, who were already interned. They did not survive. Myrna’s mother-in-law wrote about her own struggles to support herself. About how she starved. How she helped save others. About how, in the end, some of the people she saved ended up helping her.

The original letters Myrna’s mother-in-law exchanged with Myrna’s husband are now preserved in a vault outside of Washington, D.C., where scholars can access them. Myrna ended her essay about the letters with a question. “Could I ever be as brave, as self reliant, as helpful to others as she was?” I would say yes, Myrna, you could. I just hope you are never, ever put to the test the way your mother-in-law was.

A screen reader called JAWS lets me use a computer to read and write, and when power user Sue Martin generously donated a series of her JAWS refresher classes to this year’s auction benefitting the Seeing Eye, , I bid on it – and won!

Sue lost her sight when she was 26, and she works for The United States Department of Veterans Affairs as a management analyst. She squeezes me into her busy life for an hour-long JAWS class every Friday over the phone, and in-between teaching me to use Notification Bars and navigation quick keys, she lets me in on her progress writing a memoir. Sue is a courageous woman, and that’s not just because she’s willing to try to teach a technology nincompoop like me to improve my computer skills. Her guest post explains her decision to share her life story.

Out of the whirlpool

by Sue Martin

Certified JAWS instructor Sue Martin and her Seeing Eye dog Kismet.

I’ve known that I would write my story for years, it was just a question of when. When I was twenty six I was deeply depressed. When I thought I was out of options I tried to kill myself with a gun. I didn’t manage to kill myself. Instead my suicide attempt resulted in my blindness. I was no less depressed but now I had blindness to deal with on top of the depression. Putting my life back together after that fateful act has been a long and sometimes difficult road, but today, I’m quite content.

I didn’t used to tell people that my blindness was the result of a suicide attempt, but every time I’d hear a story of someone committing suicide I knew the time for me to come out and tell my own story was drawing closer. When I heard that some people I knew had a friend take her own life in England last January, I knew the time had come.

I started a blog, and before I knew it the blog turned into a book. I’m close to finishing the writing, and an editor is helping me sort through plans to consider as I move to publication.

Why am I writing this book? I want to shine a light on suicidal depression. It can happen to anyone anywhere at any time. The key to overcoming depression is to recognize it, talk about it, and ask for help. As long as there is life there is hope, and my hope is that, by sharing my story, I can maybe, just maybe, save a life.

The working title of Sue’s story is “Out of the Whirlpool,” and you can hear her talk about her writing project (and enjoy her sweet Alabama drawl!) on an interview on Freedom Scientific’s July 2012 podcast.

A photo from last year’s RIC Summer Camp.

My job at Easter Seals Headquarters just started a program called Outside In that gives employees up to one week of on-the-clock (paid!) time to volunteer for another non-profit organization. The idea is to learn what’s going on “outside” of Easter Seals and bring ideas from the experience back “in.”

One of my co-workers used the Outside In hours to work with a non-profit organization called The Five Project to help train people with autism in Shaanxi, China. Another volunteered in El Salvador with an organization called ENLACE to build a road that will help farmers transport crops and allow kids to walk to school safely.

Whitney and I are sticking closer to home. Next weekend the Rehabilitation Institute of Chicago (RIC) and the Wounded Heroes Foundation are sponsoring a sports camp in Chicago specially designed for injured military personnel with physical disabilities. From the RIC Life Center web site:

Elite level coaches will teach wounded veterans a variety of sports, including sitting volleyball, archery, sled hockey, power lifting, wheelchair basketball, judo, kayaking, tennis, rowing, cycling, field, and swimming.

The camp sounded interesting to me for a variety of reasons, so I wrote Alex Spencer, the Wirtz Sports Intern at RIC, to let him know that I was interested in volunteering. I explained that I am blind and use a Seeing Eye dog, and warned that he might not want to enlist me to help at the archery range. Alex wrote back with all sorts of ideas, finally settling on having us help with Food/Hydration/General Assistance. I’m looking forward to camp, especially after reading this little tidbit on the volunteer orientation information they sent out last week:

-HAVE FUN! Sure, we all have a job to do, but who says we can’t have fun while doing it?! This camp is a great opportunity to show how much we appreciate those who serve our country. Feel free to mingle with the athletes and get to know them a bit.

And gee, as much as I hate to miss our weekly hourlong meeting at work, I think somehow we’ll manage to have fun at camp. Let’s just hope I can stop Whitney from fetching the tennis balls and jumping into Lake Michigan to chase the kayaks while we’re there.

Mary Finnegan is a cancer survivor who attended my memoir-writing class for senior citizens in downtown Chicago a few years back. When she read the guest post my husband Mike Knezovich wrote here after his sister died, Mary offered to light a luminaria for Kris in the Oak Lawn Relay for Life of the American Cancer Society. Mike and I were both very moved by this memorial to Kris, and I appreciate Mary’s willingness to write a guest post describing the experience.

Life renewed, and hope for the future

by Mary Finnegan

Kris’ luminaria, like all the luminarias, was randomly placed along the track at Oak Lawn Pavilion Park for the Oak Park Relay for Life of the American Cancer Society. There really aren’t a lot of trees along the track, but there was a beautiful evergreen tree just yards behind her candle. I thought that was a nice placement for her luminaria.

This is the seventh year that my husband and I have participated in the Oak Lawn Relay for Life. There are three reasons to relay:

• To celebrate survivors,
• To remember those, like Kris, whose lives have been cut short due to cancer,
• To raise funds for research.

RFL, as the event has become known, was organized as a kind of living metaphor for the journey undertaken by a cancer patient. It begins as the sun sets, a metaphor for a cancer diagnosis. It continues throughout the darkness of night, the metaphor for surgery, chemotherapy, radiation and other treatments endured by the cancer patient. It ends at sunrise, the symbol of life renewed and hope for the future as a survivor. Theoretically, at least one member of each registered relay team is supposed to be on the track at all times during the event to symbolize that cancer never sleeps.

This may all sound very somber, but in reality, the RFL is fun. It’s more like a street fair than a wake. Relay teams set up campsites, and many of these teams host mini-fundraisers to supplement their registration donations. Beanbag games, softball, volleyball, and Frisbee contests are held, and you can dance to the music of a DJ throughout the event. The solemn part of the evening happens about 9 p.m., when names of cancer survivors as well as names of those lost to cancer are either read aloud or displayed on a screen while soft music plays in the background. After all the names are displayed, nearly 200 relayers walked silently around the track to a bagpiper’s rendition of “Amazing Grace.” It was so touching to see all the candles flickering in the luminarias around the track, and it was hard not to cry. I have personally lost so many friends to cancer, and I remember all of them every year as I complete this journey around the track.

After the silent walk, nighttime dancing and other activities continue. Teens love it. People my age find it hard to stay awake. Because of the torrid weather, which was mercifully overcast that night, I almost had to drag myself to the event. But when I got there, I was glad I came. As a survivor, I was treated to dinner in the air-conditioned Pavilion gym. My husband, as my caregiver, also was recognized during the survivors’/caregivers lap around the track.

I was glad to see that many of the friends I made throughout the past seven years returned as I did to celebrate, remember, and fight back through raising funds for research. I was also glad that I could help to remember Kris and witness her candle burning in the warm summer night.