As an occasional, amateur poet, I’ve always wanted to go to a poetry workshop. Yesterday I realized the dream and want to share the journey with you.

            The workshop was ideal: it was free, online and was about crip poetry (poetry with a disability lens). A half dozen participants from three continents analyzed a few poems and did a couple writing exercises.

            The first exercise was based on this poem:

I Am Not One of The

BY CHERYL MARIE WADE

I am not one of the physically challenged —

I’m a sock in the eye with gnarled fist
I’m a French kiss with a cleft tongue
I’m orthopedic shoes sewn on a last of your fear…”

Here’s my version:

                                                I’m Not One of the…

                                                                        Katherine Schneider

I’m not one of the “legally blind” (“just make it larger and I can see it”) people.

I’m a “see with my fingers”, bump into it, blind as a bat, walk at midnight on a starless night gal.

My blind eyes jerk, uncovered by sunglasses.

My Seeing Eye dog does the looking; my fingers and ears do the reading.

I feel your gaze and send back a force field of requests:

     Talk to me, not about me!

     Ask what I need, don’t assume!

     Walk/roll beside me.

We can listen to the leaves crunch, smell the bonfires, taste the cider, and  feel the north wind bringing fall to us all.

            The workshop leader talked a lot about the form of the poem on the page as important in communicating the content. I mentioned that hearing a poem changes the form or at least removes the visual dimensions of form. Most poetry uses a lot of visual imagery, which is obviously different for those of us whose imagery is nonvisual. 

            The workshop made me think and made me want to look for more poetry workshops and find some other blind poets to chat with.   In all, a fun way to spend a rainy Saturday afternoon.

            If you’re intrigued about crip poetry, you could read this essay:

https://wordgathering.syr.edu/past_issues/issue2/essay/ferris.html

or immerse yourself in some of the poetry in Beauty Is a Verb edited by Black, Bartlett and Northen.  

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            Throughout my adult life I’ve enjoyed explaining disabilities to kids.  My Seeing Eye dogs and I have been in nursery schools to high schools, public and private, small and large.  The kids’ questions are so wonderful. From “How do you find your dog’s poop to clean it up?” to “Did people tease you when you were little?” They get right to the point.

            Yesterday I experienced a ripple from one of those talks, probably given twenty-five years ago to a preschool crowd.  A woman stopped me as a friend and I were going to the last farmers’ market of the season.  She wanted to tell me I’d talked to her preschool and it had been so memorable she said that she’d never forget it. I was doing the Midwestern humble “that’s great, bye now” thing when she said something to her child.  It began to dawn on me that I needed to switch gears and go into educator mode. I said “hi” to the kid and explained that my eyes were broken and the dog saw for me.  I then asked if the child would like to meet the Seeing Eye dog and got a cautious affirmative response from the mom. I asked name and age of said kid and the mom asked if she could take a picture of us with her child.  Judging by the fact the child had said nothing, was in a wagon or stroller or other wheeled conveyance and was above the usual age for getting such a ride, I began to put two and two together.

            Mom had learned about disabilities when she was little from my talk, and now had a child with disabilities herself.  Hopefully something I’d said had made this parental journey into Disabilityland just a little easier.  Sure, I can play local celeb and smile for a picture! Of course, Calvin was glad to socialize with the young one, probably snuffling for crumbs in the wheeled conveyance. 

            You never know the ripples that will come from a little act of kindness. Keep dropping pebbles!

            A friend who is intrigued  with robots turns eighty this week.  My campus has just started having food deliveries by a robot company called Kiwibot. So, I began to work to have a birthday supper for my friend catered by the kiwibot.

            First, I had to get a new campus identification card; my old one wouldn’t do high tech things. Then I needed to download an app, Everyday, put money on my campus identification card, transfer it to the app, order the food and get it delivered to a campus building near my house at party time.  Since the app was not accessible to my screen reader, I had to get sighted assistance at almost every turn. 

            The good news was that everyone I asked liked the idea of doing this robot-catered 80th birthday party for someone, so they helped to the best of their abilities.  Most (even university employees who I thought should know about the new food delivery system, knew nothing.)

            But after about a dozen hours of assistance, I got the food ordered and paid for. The party-goers met the robot at the right place at the right time on campus, but couldn’t get the food out of it. I should have gotten an email, a text or a phone call to make it “open Sesame”, but didn’t. 

            Now I’ve begun the process to get my money back.  I wonder if it will take as long as ordering from the bot.  Emails and a phone call ended up with my needing to go to the BluGold card office for the third time. You guessed it: to fill out a refund form. I’m assured the check will be in the mail, minus $15 for “processing fee”.   

            Luckily, I’d made a plan B so served my guests soup, salad, bread and wonderful bars from bake sales.  The birthday lady has pictures of the robot and a fancy toy robot to remember the caper by. Being almost eighty helped her be gracious and make the best out of the situation.

 I can either focus on the glitchy technology or be grateful for all the friends and campus community members who tried to make it work. After a beer and a good night’s sleep, I’m tending toward the “grateful for all the help” view.

            Having gone to three funerals this summer, I’ve been thinking a lot about what’s important in life. Or, to get personal, what do you want your obituary to say (in addition to the bare facts)?

            I’m fascinated with obituaries and the way the good ones give the spirit of the person in a few phrases and show the extraordinariness in the ordinary—what an art! Two good examples are: Dead Lines: Slices of Life from the obit beat by G. Hesselberg and Find the Good by H. Lende. Whether they’re profiling famous zoo animals or crotchety townspeople, both managed to acknowledge the flaws, but accentuate the good. 

            Some of the lessons Lende drew from her work as an obituary writer struck home: keep playing, do “little” acts of kindness and join a chorus (maybe not literally for some of us).  

            Then there’s the ordinary daily events that are so small you can miss their extraordinariness.  For example, the wonderfulness of fresh food this time of year like corn, tomatoes and cantaloupe. I almost listed zucchini, but I might get blowback on that one.

            Or consider the fact that Calvin my Seeing Eye dog has learned to sigh appropriately. Several of my previous guide dogs did this when they reached middle age, and now that he’s five, he’s doing it. The current example is as follows: I was getting ready for a five-hour strategic planning meeting on Zoom and told him in a faky positive voice: “Calvin, we get to go to a five-hour Zoom meeting.” He sighed heartily, not a bit fooled by my chipper tone.  Of course, his response was right!

            Wishing you extraordinary ordinary days and life.   

Every four years emergency medical and law enforcement do an in-person disaster drill of some sort in Eau Claire.  This time it was a plane crash at the airport. City, county and township responders from a couple counties take part and they recruit citizens to be the “victims”.  I volunteered and got three friends with varying abilities and disabilities to volunteer too.

After lying in a field for about an hour (even though I had a broken leg and a head wound), I was given an ambulance ride for a few minutes and then released from the exercise and fed pizza.  Calvin stayed calmly by my side throughout the exercise. Both he and I hope it’s our last ambulance ride until we do it again in four years.  The slow response to our group (all tagged as high priority), and the seeming lack of organization makes me realize they really do need to do these drills.  I’m sure they’re time intensive to organize and pull off, but I’d vote for them doing them more often.  Calvin agrees because he got the last bite of my pizza and has my wrist band to put in his brag book. 

For those of you with disabilities, if you can, please find your local emergency planning agency and volunteer to be a victim.  The first responders really need real people with disabilities to participate and give feedback.  The responders are good caring people, but may well have no training on disability do’s and don’ts.  Also, plan your top three bullet points for how to deal with you as a person with a disability.

My three are:

  • Don’t separate me from my service dog, and if you have to, hold his leash at all times
  • Tell me what you’re doing; don’t just grab and manhandle me.
  • Let me take your elbow; don’t push me in front of you.

You can help make the next disaster in your town go better for all citizens. Stay safe out there!

I’m often asked: “is accessibility getting better?”

The Americans with Disabilities Act is 32 years old on July 26 and people wonder if we’ve achieved equal access.  I’d say ”yes” and “no”.

            For example:

  • Wordle was made accessible to screen reader users, but when the New York Times upgraded it, the accessibility went away. I had to get the volunteer coder to fix it, which he graciously did.
  • The new national crisis line, 988, is “working on” providing American Sign Language service in addition to Spanish, Hmong, etc.
  • I read about blind-friendly Covid tests, so of course had to get some. If you have a smartphone and can see a green light to tell if it’s blinking or solid, you can do it. Low vision friendly, maybe; blind-friendly, not!
  • My guide dog and I usually are welcomed in public places and on public transportation, but still occasionally run into attempted denials of service. Sometimes it gets tricky, like when a taxi zooms by and doesn’t pick us up. My guide dog is great but won’t read me license plate numbers!
  • When websites are made accessible to screen readers and libraries provide more electronic resources, my choices of reading matter multiply. I love to read the newest best seller the day it becomes available nowadays!

As the foregoing examples show, the law can mandate access, but it’s we humans who make it work or don’t. When ADA Day comes around each year, I like to publicly celebrate it to remind people that we are in this together and disability is a joinable minority group.  What you do today to support my access may come back to help you if you develop a disability. Half the population over 65 has one!

If you want to be an awesome ally, ask “May I help? If so, how?” kinds of questions, listen to the answers and help amplify the voice of the person with the access need without speaking for them, unless requested to do so. Also make sure things you’re in charge of are accessible.  Describing that Facebook picture “Look at the chocolate cake I just baked” instead of “Look at this” makes your blind friends feel included and takes just a few seconds. 

I’m celebrating the ADA  by helping lead a discussion at my public library on Emily Ladau’s excellent book Demystifying Disability. I may be pictured in collages on the Great Lakes ADA website and the Wisconsin Department of Health Services website. I’ll attend a county meeting by Zoom instead of in person because of an ADA accommodation.   Of course, I’ll play Wordle and take a celebratory walk with my guide dog. I’ll continue on with whatever advocacy opportunities the day brings me. As Amanda Gorman said in her poem, “Hymn for the Hurting”, We must triumph or try.

            In honor of Americans with Disabilities Act (ADA) month, I’d like to send some love out to authors of memoirs of the disability experience and to the approximately 72 authors of the Schneider Family Book Awards books. For those of you who read Emily Ladau’s excellent intro to the world of disability issues, Demystifying Disability, read on to find out what you might want to read next! Maybe you want to start with something funny; consider Kevin Kling’s The Dog Says How.

            A good memoir to me contains not only the triumphs and traumas of the author’s life, but also the daily life of that person. When I’ve read a good memoir, I feel like I have visited that person’s world.   Here are a baker’s  dozen that I’ve read recently about people living with various disabilities which qualify as great:

  • The Invisible Kingdom by O’Rourke (invisible disabilities)
  • Their Plant Eyes by Godin
  • The Power of Disability by Etmanksi  
  • The Night the Lights Went out by Magary (traumatic brain injury)
  • Unmasking Autism: Discovering the New Faces of Neurodiversity by Price
  • Deaf Utopia by Dimarco (Deafness)
  • Not Fade Away by Alexander (Usher’s Syndrome, deafness and blindness)
  • My Beautiful Struggle by Bone (wheelchair using beauty consultant)
  • About Us: Essays from the New York Times Disability Series, edited by Garland-Thomson
  • Disability Visibility, edited by Wong
  • Easy Beauty by Jones (pain, disfigurement, motherhood)
  • The Beauty of Dusk by Bruni (blind in one eye)
  • My Body is Not a Prayer Request: Disability Justice in the Church by Amy Kenny

            Back in 2004 the American Library Association awarded the first Schneider Family Book Awards.  I started this award because when I was little, there were so few books for kids about life with disabilities—just biographies of Louis Braille and Helen Keller, plus The Little Lame Prince and the Little House books. After eighteen years of the awards, the poor judges have to consider a couple hundred books each year.  Yes! You can find info about the winners at:

Schneider Family Book Award, 2004-2022 – TeachingBooks

https://www.teachingbooks.net › … This year’s winners have characters living with anxiety,  autism,  blindness, Deafness, dyslexia, facial disfigurement, mobility impairments and  neurodivergence. 

            Recently Amazon added “disability fiction” as a category within fiction, so you can find even more good disability reads more easily. Enjoy good disability reading!

Recently I saw this book and the quote beneath it about black joy. They made me think a lot about blind/disability joy.

Black Joy: Stories of Resilience, Resistance and Restoration by Tracey Michael Lewis

“We need to see stories with BIPOC protagonists experiencing love, joy and pleasure. We need to practice world building, where we visualize the world that we want.” Regina Gunapranata

            Anger, sadness and fear abound for me as  I grapple with ableism, but sometimes I need to focus on joy instead. Here’s my alphabet of blind joy:

A: advocacy work for increased access when you can see progress

B: bird songs, even when I’m not able to identify the bird

C: card game with Brailled cards

D: described video of a popular movie from Netflix

E: escaping with a good book; with Bookshare and other sources, there are millions to choose from

F: first fresh asparagus, rhubarb, radishes…from the farmers’ market

G: game of chase with Calvin

H: humor like the silly memes  on Facebook that someone has described; even Alexa tells jokes) like: Did you hear about the cat who thought she was a crow? She kept saying: “paw, paw”

I: information access, so much better for blind people than it was when I was young

J: jays and crows and other corvids

K: kids who remind me how wonderful ordinary things really are

L: lounging on the back steps, feeling the sun on my face

M: music to fit my mood at the push of a button

N: naps

O: odors wafting around the neighborhood like fresh mown grass and barbecuing

P: phoning a friend and catching up on their world

Q: quiet time to reflect and refresh

R: rain on the roof when you know you don’t have to go out for awhile

S: stroking my dog’s soft coat or the needles of my new white pine tree

T: saying thanks to Higher Power or people who have been kind

U: useful work paid or volunteer

V: Voiceover on iPhone reading everything on the screen (except pictures that it can’t read)

W: Wordle, especially when I get it in three or four tries

X: experimenting with a new recipe gotten off the Internet or from Alexa

Y: yodeling, yowling, singing, whistling in the privacy of my backyard or shower

Z: Zydeco music from Amazon to do my exercising to

            What’s your alphabet of joy?

                Recently the university where I worked the second half of my career asked if they could archive my papers.  After I gulped and thought “I didn’t know I was that old”, I agreed.  They sold me by pointing out there aren’t many disability advocate archives in Wisconsin.

                An archive contains important documents or records. My books, book chapters, journal articles, blogs, etc. added up to about ten pounds of stuff for the archivist to cart away.  I wanted my archive to represent me as a blind person, so I put in a Braille copy of my children’s book, along with a print copy.

                The archivist pointed out one could also archive pictures and objects. He wanted photos of important professional moments, not cute dog pictures, although he said it much more diplomatically than that.  I suggested the dedication of the guide dog statue on campus and my county board advertising cards.

                For objects I suggested a puzzle a friend had marked in Braille so I could use it, but he said no thanks. I told him how few games and puzzles are available and argued that it was meaningful because it was a grassroots solution to an information access problem which is what most of my advocacy is about.  He remains unconvinced, but archives can be added to, so the discussion may be ongoing.

                The archives do seem a bit one-dimensional. They don’t include:

  • Favorite recipes like black beans with my friend’s homemade salsa
  • My ever-growing to be read list
  • Hundreds of little statues of animals (most well represented are crows, dogs and seals)
  • Favorite jokes that I can’t bear to delete such as:

Labrador House Rules
1.. Don’t come home smelling of other dogs

2. I can sleep anywhere I choose even if it means you trip over me

3. Don’t call me or lead me to a bath

4. Let me outside even though I came in, there was an area I forgot to sniff

5. You must feed me every goodie you eat

6. Don’t shhh me from barking while you are on the phone, I heard the wind blowing the leaves

7. If it lands on the floor, it’s mine!

8. Don’t think you can leave a room without me.

9. Don’t move me while sleeping sideways in the middle of the bed; you have enough room on the edge

10 You will never pee alone again.

                Now it’s your turn: what would you archive?

              Revised version appeared in Volume One April 21

  I notice as younger friends get ready to retire, many wonder what they’ll do to keep busy and productive.  I’d offer this day’s journal as an example of how it works; e.g., opportunities to serve will find you!

Morning: I had  good conversations about who should chair county board with a couple folks. There are no perfect candidates, but at least two good ones.  Then I chatted  with an aging advocate at the state level about how to get aging and disability groups working together on common issues.

Afternoon:

 Act one:

I was meeting with county IT folks by Webex plus a developer of an inaccessible app that needs to be made accessible for my county board duties. The developer hadn’t used any talking iPhone kinds of devices so I was holding my iPhone up to the camera and tapping on things to show how it worked. Somehow, I triggered 911 without knowing it.  So, I’m blithely continuing the meeting and someone starts to pound on the front door and ring the bell.  I tell my Seeing Eye dog  Calvin who has gone into full bay mode that no, we’ll just ignore the doorbell.  Then the annoying person goes to the back door and starts pounding.  That’s more aggressive than most political candidates or sales people, so I ask the meeting folks pardon to go tell the person at the door to get lost. Calvin is tied to the chair leg so when I get up to go answer the door, he starts to drag the chair toward the door.  I stick my head out and a nice young man says “Eau Claire police” “We got a 911 call from this address.” I apologize profusely and say my cellphone did it and he reassures me that’s more common than you’d think. He wanted to know who I was and seemed to write my name down or check it on a form and we said “bye”.  After my meeting finished, I went into settings on the iPhone and think I managed to turn off what triggered the 911 call. 

Glad I answered the door or I might have had to replace a door if they bust them down.  911 does work in Eau Claire!

Act Two:

Go over to the university for a candidates forum. I’m the last one and there were about twenty folks there when I spoke.  Students’ questions were of the ilk of What is the county’s biggest problem and how will you solve it.  In a different district there was a student running who has a sustainability plan and indicated that he’d liaison with the state on issues and I guess solve things there too.  Good thing I’m unopposed. All I did was talk about little steps and working with others; I don’t have a grand plan.

                I finished the day with a beer and scanning news feeds and Facebook for something funny. I love that in retirement, I can run with a project, binge read a thriller, take time to chat with friends and even fit in a nap sometimes.

                Happy retirement planning!