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!

            My birthday week started out with a feast and bridge game. The week was full of wonderful gatherings with friends, usually including a fine meal that I didn’t have to cook.  I was re-elected as County Board supervisor, so went to a blessedly short meeting (by phone) for that and a few other phone meetings. I did a workshop for human resources professionals on Are You Access Able; only one participant was spotted looking at their phone. All the wonderful wishes from friends near and far make me know it’s going to be a good year!

I notice signs of increasing accessibility, the Hallmark store had four Brailled birthday cards to choose from, a friend told me. An  American Greetings e-card I got was a jaunty singing card that even had my name inserted into the song. There was no description of the card and no idea what the thank you card I sent back looked like, but the site used to be even less accessible, so progress is being made.

                Podcasts and inspiring emails on my natal day ranged from “How to Have Fun” to “Take Up Your Cross and Follow Me”. I share the day with William Wordsworth. I liked his poetry in school and still remember the image at the end of “I Wandered Lonely as a Cloud” about thinking about “dancing with daffodils”.

                May it be a year of that for me and for you.

            I’m recovering from a book club discussion of Handle with Care by Picoult. The focus of the book is a wrongful birth lawsuit that a family launches because of a child with osteogenesis imperfecta and how the lawsuit divides family members and destroys friendships. The book club members (none other than me claim a disability) spoke about their own family’s burdens from caregiving. 

            Both the book and the discussion took me back to childhood when I was told subtly and overtly that I was a burden. Friends and therapy helped me work through that burden and the suicidal feelings I struggled with. There are still scars like when I agonize before asking for something I need to be done for me because of my disability.

            First, I needed to remind myself that the book club ladies were not overtly saying I was a burden; just that their disabled family members were.

              Then I had  to reconnect with the other side of the coin which is that  I’m also a blessing.  I’m beautifully and wonderfully made as the psalmist states. I bless the world with my disability justice work, my encouraging of others and my Bad sense of humor.

            To remind myself that I am beloved, I pray, talk to friends, focus on the good gifts life gives me like Calvin and hearing a cardinal calling, listen to music, and  read poetry.  

            I pray that those who feel heavy burdens from caregiving can also feel the blessings that the recipient of their care is bringing them. I also pray that I find ways to affirm young people with disabilities that each one of us is both a burden and a blessing to those we care about. A couple books I’m reading during Lent, Good Enough by Kate Bowler and Whispers of Rest  by Bonnie Gray may give me some ideas.   

A bias is a feeling or predisposition that is preconceived or unreasoned and often results in unfair treatment.

Thirty years after the Americans with Disabilities Act was passed, the Smithsonian’s traveling exhibit “The Bias Inside Us” comes to Eau Claire complete with its own apparent bias that those of us who do not read regular print don’t need or want to partake of such an exhibit. No Braille copy of the text, no QR codes to read audio descriptions and text using a cellphone, no guides to describe the exhibit.

The goals of the exhibit are laudable:

“1.  We want to help people understand and counter their implicit biases.

2.    We want to help build capacity in communities to convene dialogue that will increase empathy.

3.   We want to inspire more inclusive schools, communities, and workplaces.”

There’s lots of good info in the exhibit, so I wanted it to be available to everybody, including those of us who don’t read regular print.   After six months of working with the university folk who co-sponsor the exhibit, we’ve moved the needle toward some access. Reportedly the Smithsonian will provide a Braille copy of the exhibit’s text. QR codes (so those with iPhones could have the text read aloud to them) will not be provided. I trained a few audio describers so someone could arrange for a describer to go to the exhibit with them and provide what descriptions the exhibit-goer wants. But I’m having a hard time getting out the word that audio description services are available.  In case you know someone who would like such services, contact Anna Zook at the public library at annaz@eauclaire.lib.wi.us  Or read the text of the exhibit at its website

https://biasinsideus.si.edu .  It’s kind of like reading a cookbook, versus sampling the dish, but better than nothing.  

There’s also the irony that the book that  local groups are reading to encourage thinking about bias, Biased: Uncovering the Hidden Prejudice That Shapes What We See, Think, and Do by Jennifer Eberhardt, focuses almost entirely on research on biases triggered by visual perceptions. The sequence “see, think and do” should be broadened to “perceive, think and do”.  Blind people judge by voice, smell, etc. as do sighted people when they can’t see, like when  talking on the phone.  I wonder if the research just hasn’t been done on such non-visual biases, which in itself would be a bias. 

As the online exhibit says: “Our world is structured in ways that reinforce and reflect systemic bias. But change is possible. Every big institutional structure was built and can therefore be rebuilt.”

As exhibit text says,  We can: “Take responsibility. I can become aware of bias and catch it in the act. I can bring curiosity and self-discovery to understand my role in both experiencing and reflecting bias.  Make a change. I can work to undo the systemic injustices in my community, locally, nationally, and internationally. I can stand up as an ally. I can reflect on my own internalized biases to build respect for myself and others.  I can bring humanity into being human.”

Concretely, both the exhibit and the book point out some clues for what to do about biases, starting with don’t ignore differences.  When people say to me, “I don’t think of you as blind”, I worry. I worry that you won’t provide text to accompany your Facebook picture of that beautiful cake you just baked. Now that I’ve made you aware, will you become an ally and put descriptive text with your Facebook pictures? One of the trained audio describers works at the Chippewa Valley Museum and plans to institute some audio description there.   These are tiny actions, but if we all take a lot of tiny actions, we can make the world better.  That’s my bias!

Visit

https://www.pablocenter.org › all-events › the-bias-inside-… for information about visiting the exhibit in Eau Claire.

Braille transcription of The Bias Inside Us will be available upon exhibit entry. A virtual exhibit (https://biasinsideus.si.edu/online-exhibition) is accessible with screen readers. Contact Robin Miller at millerob@uwec.edu or Anna Zook at annaz@eauclaire.lib.wi.us for additional information about exhibit accessibility for people who are blind or visually impaired.

                Remember when you had a pack of little Valentines and had to give one to each classmate? I’ll count that as Valentine’s Day 1.0.   Then 2.0 was when you agonized about the perfect Valentine for that love of your life. Did you ever find just the right card?

                Which leads me to Valentine’s Day 3.0.  This may be the closest to the origin of the day. History traces the origin of the saints commemorated on this day back to the fifth century A.D. There were a couple great men named Valentine, martyred for their faith. One might have been a bishop who was generous to the poor.  Before it was hijacked by the lace and hearts of the Victorian era and the predecessors of Hallmark, the day was about love of neighbor. 

                To get you out of Covid funk and ready to celebrate generously, I recommend reading Little Pieces of Hope  by Todd Doughty.    It’s full of lists and references to children’s books,  poetry and pop culture to encourage you to notice the little stuff and seize the day. If you can even read one of the lists without smiling, you’re made of sterner stuff than I am.

                Or, take the public library’s challenge and read an unconventional love story during February , https://www.ecpubliclibrary                                             .               info/challenge2022/

Signing up and entering the month’s reading challenge enters you into a drawing for a pizza.  Who knows, you might have pizza to share.  I’m reading a Matt Haig book, The Humans about an extraterrestrial falling in love with Earth.  I so enjoyed his Midnight Library.

                Then if you’re ready, bake cookies, write cards, make phone calls, and have a blast spreading love. Calvin points out to me that some of that love should be directed toward your animals too. Maybe he’ll get that last bite of a pizza I plan to share with a friend. 

            A friend challenged me to write an alphabet from A to Z of descriptive words or phrases for my 2021. Try it!

             I’ve challenged other folks and have gotten some interesting responses. One friend started out with:

 A: abnormal

 B because of 

C: Crazy Covid. 

Another mentioned hunting, birds and crops from their garden, accentuating normal life activities.  

                        Here’s mine:

A: access issues as usual!

B: beginning to figure out meeting my support needs in the “new normal”

C: Calvin’s antics kept me sane

D: didn’t have Covid

E: got enough to eat, enough to do, etc.

F: found fun in small ways like sharing Facebook funnies

G: grew a little kinder (sometimes, anyway)

H: house made me happy by not demanding any big presents

I: inclusion efforts on several boards

J: joined a couple new boards

K: “Kathie Comments” and “Corona Chronicle” blogs kept going

L: learned to use a Braille keyboard for iPhone

M: much to be grateful for

N: new experiences like lecturing by Zoom

O: got older and watched friends getting older

P: participated as I could, in civic life

Q: quit sulking (mostly) about needing to do church differently

R: read a lot of great books

S: made lots of scones of varying kinds to share with friends (cranberry orange was a fan favorite)

T: tomato crop was excellent

U: ups and downs managed by talking with  friends and prayer

V: vaccinated and boosted

W: wrote a lot of emails

X: exercised on stationary bike almost as much as my goal was!

Y: yacked with a lot of friends, sometimes by phone, sometimes in person

Z: zydeco and other music from Amazon to keep me motivated during exercise

As for 2022, my wishes for all of us  are well summarized by the last couple lines of Gary Johnson’s poem, “Another Year”:

                        “May this year bring us before it has flown
                          All we would have wished for had we only known”

                This is not an infomercial for Schneider for Supervisor! It is the story of the team it takes and the fun along the way to get me the fifty signatures I need to be on the ballot April 5. All over the county, twenty-eight other incumbents, plus an unknown number of challengers, are doing similar canvassing.

                 The extras in my story come about because of my blindness. I could not do this by myself, so I built a team.

On the team:

  • A retired gal who loves to shop thrift stores and scored a clipboard for me.
  • A retired faculty member who produced an advertising card for me that was described as “professional” by a media specialist.
  • A husband and wife and their nine-year-old, and several other friends, who took time out of busy lives to go  door to door with me.
  • A friend who went around her apartment building which is in my district and scored twenty  signatures.
  • Friends who drove me to the Courthouse to pick up and later drop off my papers.
  • Several people who can’t go door to door, who agreed to be on my prayer team to support my being my best self when doing county business.
  • Voters in the district who signed for me. My oldest signer is 92 and my youngest is 18. One gal was one of the first three women on the County Board back in the sixties.  She said one person wouldn’t sign for her and just told her to go home because women shouldn’t be out there on boards.  She went on to serve both on the County Board and eventually City Council, as well.  Only one person said “I don’t think so” when asked to sign.
  • My Seeing Eye dog was a perfect gentleman, just standing there letting the house dogs sniff him or tell him to get off their property.

                The people who walked with me described Christmas decorations or made a game out of trying to predict if anyone was home. Of course, the nine-year-old had the best line. After listening to my intro several times about this just being signing to get me on the ballot and the person wasn’t committing themselves to vote for me, she told the next person “You don’t have to vote for her!” 

                For an introvert like me, this was hard work. Meeting new neighbors and hearing people’s ideas and issues made it good work.  The weather gods were with me and I got the requisite number of signatures before it turned bitter cold.

                The friend who brought pizza to celebrate the end of signature gathering made the perfect ending to a project that was way more fun as a team event than a solo. Interdependence, a necessity for those of us with disabilities, once again proved to be the better way to go. 

                                               

            Yesterday was Alexa’s birthday and she gave away a joke book, “Tell Me a Joke” through Kindle. Unfortunately, it is inaccessible using either Voiceover on my iPhone or Kindle for PC with JAWS (my screen reading software).

            I contacted Amazon’s disability helpline and they promised to send my complaint in. They acknowledged that the accessibility features “weren’t turned on”. The customer service rep didn’t seem to think I’d ever hear back, but reiterated that he’d turn in my comment.

            I’m frustrated. Both Alexa and Kindle have great potential for increasing accessibility to written matter for blind people. If it’s just a matter of “turning on” accessibility features, why wouldn’t Amazon do it on this promotional giveaway?

            I’m aware this is a “first world” blind problem. I’m aware there are many joke books available to me in accessible format and I can just ask Alexa to tell me a joke.  But it feels like being invited to a party and then being told at the door, “actually you’re not wanted.”

            Am I madder about this than I would have been pre-Covid? Probably. So, I get to practice those stress management skills I’m always recommending like take a walk, distract yourself with something pleasurable, etc. Luckily, I was able to download the new Grisham book The Judge’s List and it is an engrossing read.

            To end this diatribe with a smile, here’s a limerick from The Mammoth Book of Filthy Limericks that does consider accessibility:

                                    “On the breast of a barmaid named Gail

                                    Was written the price of the ale

                                    And on her behind,

                                    For the sake of the blind

                                    Was the same information in Braille.”