I’ve started a three times a week column “Corona Chronicle: Dispatches from the Sidelines” at a community-supported journalism site www.cvpost.org Because of “technical difficulties” it’s easier for me to share my strength, hope and experience there.  Here’s a couple dispatches, so you can see if it’s worth clicking on that www.cvpost.org link!  Don’t be a stranger and do take good care of you and yours.  Kathie

  1. The Good Stuff

A wise Jesuit priest responded to my email saying “Be sure you don’t miss the good stuff” in these days of COVID-19. These dispatches will focus on the good stuff and what I as a seventy year-old blind person, living in Eau Claire, WI can do to help my community in the time of Corona. Please email me story ideas and your thoughts at schneiks@uwec.edu

Here’s some good stuff I’ve gleaned from Facebook:

Parent comments after one day of home schooling: “Can I transfer this student out of my class?” and “Maybe the teacher wasn’t all wrong about my child’s behavior.”

Comment on handwashing: “I’ve washed my hands so many times I’m seeing the notes I wrote on them for that history test in 1995.”

“I can face self-quarantine I have wine.”

“Now that we have people washing hands correctly next let’s work on turn signaling when driving.”

Pro tip for couples working from home together…get yourself an imaginary coworker….someone you can blame things on. We have Cheryl, who keeps leaving her dirty dishes all over the place. We don’t know what we are going to do about her.

  1. What About Us Singles

Much of the advice about doing social distancing is for couples and families. Wrestling with who would notice if a single person got sick or had an accident, I came up with the following template for singles to make a deal with each other. The people I’ve made this deal with are Calvin’s Tribe (in honor of my new guide dog.  You may hear more from them (anonymously of course) as they respond to my daily contacts.

Info

Name:

Address:

Phone:

Email:

Contact person:

Contact person’s email or phone:

Local Contact person (if different)

Local contact person’s info:

Instructions for gaining entry to house:

Preferred hospital:

Preferred method for check in, e.g. phone or email:

 

I will contact you every morning and if I don’t hear back within 24 hours I will call and if there’s no answer I will send a trusted person to enter your home or call 911.

 

 

I queried the head of our local health department as follows:

“A friend and I lead an inclusive ministry church and fellowship supper once a month for people with significant cognitive disabilities. Your webpage on corona has great general guidelines, but we’re wondering about the following specifics for our group:
We know our group will not adhere to guidelines about keeping at a distance, sneezing into Kleenex, not putting rhythm instruments etc. in their mouths etc. At what threat level (e.g. a case in our county or what) do we cancel the service? Other than insisting on using hand sanitizer before eating, are there other specific guidelines you can give us or refer us to for our kind of a group?”

The core team discussed it and ultimately decided to cancel both March and April’s services, feeling it would be better to be cautious than have something bad happen.

Bridge group decided to do potluck instead of going to a fish boil before slugging it out at the bridge table.

Yesterday’s Wall Street Journal had a list of pandemic novels to read. Maybe I’ll try one to compare with the reality as it unfolds. The article points out that this is like practicing being afraid to inoculate oneself. The article quotes Stephen King that the pandemic in his novel The Stand is nothing like the corona virus, but I’ll guess he’ll enjoy the increased sales anyway.

Celeste Headlee in her new book Do Nothing explains we’re “overdoing and underliving.” Maybe it’s time to catch up on Lenten reading and praying.

Maybe instead of becoming a part of a zombie apocalypse, binging on news or horror novels, I’ll try to emulate the good doctor in The Plague by Camus and figure out what I can do to help.

I’m trying to figure out what I can do to support folks in assisted living and nursing home facilities who will be getting fewer visitors; so far all I’ve come up with is more frequent phone calls.

Quarantine with its consequent isolations and fears have been around since Leviticus at least. But the necessary social distancing needs to be done in a way that doesn’t add unnecessary emotional isolation. For example if a church wants to eliminate passing the peace with handshakes and hugs, they could keep verbal greetings.  Remember blind folks can’t see smiles!

So, give yourself a hug from me and carry on!

The day before I traveled to New Jersey in addition to retiring Luna and packing I needed to arrange and be at the euthanasia of my 13.5 year-old retired guide dog Fran. Her people weren’t sure she could or should wait until I get back to cross the Rainbow Bridge. After complaining to a friend about the unfairness of it all, I settled down and did what I needed to to be present for Fran and her retirement people. Fran was well loved and gave much love—a good soul.   A line in the Writer’s Almanac poem for that day “Earl” by Jenkins described what I needed to do to make it through the day:

“Well, how else are you to live except by denial, by some palatable fiction,
some little song to sing while the inevitable, the black
and white blindsiding fact, comes hurtling toward you
out of the deep?”

I pack taking three non-essential objects to ground me:  one of the NYPL lions (probably need Patience more than Fortitude), a black onyx crow and a cross.  Those and M and Ms should get me through.

Goals for the pilgrimage: bond with new dog; see God in the other people on the pilgrimage.

The pilgrimage to Seeing Eye began in earnest with a kind neighbor dropping me and my suitcase off before daybreak at the Eau Claire airport.  I was picked up from the Newark airport by a staff member from the Seeing Eye and taken in a van with other pilgrims to the campus.

There were twenty students and five trainers who spent seventeen intense days together. Wake up was at 5:30, breakfast at seven, first walk with the new dog at nine, lunch at noon, second walk in the afternoon, supper at five and last potty break for the dogs at 8:30. Usually there were one or two lectures squeezed in each day on traffic, veterinary issues, handling the public and access issues, dog grooming, etc.  It was challenging for me to spend fifteen hours a day around chatty people and remain positive and kind.

After orientation to the main building, including single dorm rooms (complete with refrigerators and Alexa), a restaurant style dining room, administrative offices, a laundry, library with computers and an exercise room, instructors walked with each student to gauge their speed and strength to help match them with the right dog. I was matched with Calvin, a two and a half year-old black Lab.  From the beginning he was an excellent worker, calm, steady and smart.  I quickly felt at ease with his walking style and we became a fine team quickly.  The last week of training involved going places like grocery stores, a courthouse, on elevators, escalators, a bus, a train church and on a paved trail like I will encounter at home. Calvin took each in stride and even showed me the particular counter we’d gone to when we went back to the grocery store a few days later. The trainers worked hard to make the lessons fun as well as educational.  For example in the big grocery store we visited, I got to go to the juice bar and ordered a beverage of my choice. Just because of the name, I got a “drunken sailor” which was citrus juices mixed with beet juice. Interesting cultural experience but not necessarily one I’ll repeat.  For church I went to a nondenominational church with a gal who didn’t want to go alone.  I’d never been to a rock music church service with music loud enough to feel the drums through your feet—another cultural experience that Calvin was calm and silent through. He also ignored geese my instructor stirred up so I suspect he’ll do well with the ducks and geese that sometimes inhabit parts of the campus.

My fellow pilgrims were amazing folks ranging in age from twenty-something to another seventy year-old. They were authors, teachers, moms, a Paralympian and government workers.  There were a few cliques but in general people gave the training 110% effort and were supportive of each other.  One gal had to leave without the dog because of some medical issues, but when they are resolved a trainer will bring her dog to her and finish the training in her home town. The team of trainers, the waitresses and cleaning staff, the volunteers who served coffee at the lounge where we waited for our turns to go on walks, etc. were dedicated and caring individuals who gave fabulous customer service to each of us.  Amenities of a high class vacation combined with working like a dog to learn to form a partnership with a new Seeing Eye dog.

In addition to the training being physically, mentally and emotionally challenging, it also grew me spiritually.  Calvin had a bowel issue throughout training and I had to work on balancing trusting the experts that it was probably just stress and would resolve with time with advocating for my need to know more specifics and what to do if it doesn’t resolve.  Ultimately I have to trust God that it will work out as it is meant to and I need to take one day at a time.  My worries are balanced with gratitude for the wonderful people I met and the privilege of getting a tenth wonderful guide dog from the Seeing Eye.

Now that we’re home and settling Calvin in to his new home, I’m led to take things a little slower and accept the many kindnesses of friends stopping by with casseroles and offers of rides and training walks with me. I’ve changed my phone message to include Calvin and am letting it take messages when I need extra naps!  I’m enjoying snuggling with and getting to know the wonderful creature that is Calvin. I’m in love.

 

After seven and a half years of work, it was time for Luna, my ninth Seeing Eye dog to hang up her harness.  She was almost ten and feeling less confident about jumping into cars for rides and over snow piles to get us through Midwest winters.  I’ve had Seeing Eye dogs for 46 years (over half the school’s 90 year history) and plan to make the fifty year club.

I went through the application process, including a medical exam and a tuberculosis test and took a walk with a roving instructor to determine my needs.  I’m slower than eight years ago, but still able to work a dog.

I was lucky enough to find the perfect retirement home for Luna, a retired couple south of town with a black Lab and years of raising guide dog pups in their history and two acres of fenced area for Luna to explore.

As I begin to pack and get ready to spend nineteen days in New Jersey, friends stop by to wish Luna and me well on our journeys. They bring treats for Luna and M&Ms and puzzles to fortify me and occupy my mind while traveling.  Luna is blessed at her last Inclusive Ministry Church to help the participants understand that she is retiring and not dying even though I’ll be appearing with a new dog in a couple months.  My retirement wishes for Luna are Facebooked as follows:

Happy Retirement Luna!

Thank you for leading me through seven and a half years of public speaking, community service and the fun of life in retirement. You’ve been a scamp—remember trying to pick the pocket of beloved Fr. Klemick! You are an astute diagnostician, smelling my front end and back end when I’m sick to determine how much cuddling I need.  You’ve made me laugh and remember to appreciate the little things in life like lying in the sun and the last bite of pizza crust.

Bless your new family with your love, humor empathy and intelligence.

By guiding them in knowing they and you are beloved creatures.  Enjoy your new adventures and don’t forget to be in touch!

Love,

Kathie

Because each Seeing Eye dog has taught me so much about life, as well as guiding me safely, this trip seems like a pilgrimage to get a new guide for the next few years of my life in both the concrete and the spiritual senses of the word guide. It’s sad because of the goodbye to the close relationship with Luna, and scary and exciting to see who I meet.  I’ve downloaded several pilgrimage books so I can compare mine with theirs.  Let the journey begin!

About this time of year I look for a couple Christmas stories to read.  I read them with a tongue in cheek attitude—how sweet but this is fiction! This year’s selection was Richard Paul Evans’ Finding Noel. Not to spoil the story, but people down on their luck still help others and good things happen.

A day after finishing this lovely novel, I’m at the grocery store with a friend picking up all sorts of baking and entertaining supplies for the season including iced cookies (polar bears and snowmen) to take to have a little tea for friends at an assisted living facility.  I did find a fruitcake but there was only one choice in a large grocery store. What is the world coming to!

As we were checking out, the lady with a young child ahead of us was taking things out of her cart because there wasn’t enough money on her food stamp card to get everything. The sighted friend I was shopping with eyeballed the situation and silently passed the checker enough money to make up the difference.  The child came back, hugged my friend’s knee (as high as they could reach) and said “thank you”.  I reimbursed my friend for half; I didn’t want to miss out on the joy of giving and off we went to drink eggnog and solve the world’s problems with a good chat.

Other signs of the season I witnessed this week:

  • A neighbor shoveled my walks and driveway expecting nothing in return
  • A book club member who doesn’t drive in the dark anymore was offered rides
  • The dentist’s office agreed to email me a reminder instead of handing me a card I can’t read (without trying to say HIPA prevents it like the medical clinics say)
  • At a donation site for toys for local kids in need a mom brought toys her ten year-old had picked out for kids that had less instead of getting presents herself. She did say that the three year-old brother had decided differently.

Maybe those sweet Christmas novels are true in that they make you notice the good stuff that is going on all around us. At least it worked for me this week.

 

The National Center on Disability and Journalism at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication announced the winners of the 2019 Katherine Schneider Journalism Award for Excellence in Reporting on Disability, the only journalism contest devoted exclusively to the coverage of people with disabilities and disability issues.

Journalists working in digital, print and broadcast media from around the world competed for awards and cash prizes totaling $17,000.

First place in the large media market category was awarded to Right to Fail, Living Apart, Coming Undone an in-depth investigation by ProPublica and PBS Frontline in collaboration with The New York Times.

Second place in the large media market category was awarded to Trapped: Abuse and neglect in private care entered by Reveal from The Center for Investigative Reporting.

Third place in the large media market category was awarded to Unfit by Radiolab. Produced by Matt Kielty, Pat Walters and Lulu Miller, the episodes explore how people with disabilities were targeted for sterilization during the early 20th century as a form of eugenic genocide, but laws permitting forced sterilization have quietly stayed on the books.

Honorable mention in the large media market category was awarded to The parents said t was a special needs bed. The state said it was a cage by Mary Jo Pitzl of The Arizona Republic.

First place in the small media market category was awarded to You’re Not Alone, a collaborative documentary between the Milwaukee Journal Sentinel and Milwaukee PBS. The program followed the lives of four young people from Wisconsin as they navigated mental health challenges. The final product included a suicide prevention toolkit at jsonline.com/yourenotalone.

Second place in the small media market category was awarded to The Post and Courier of Charleston, South Carolina, for We dined with wheelchair users at 4 of Charleston’s top lunch spots. Here’s what they experienced.

Third place in the small media market category was awarded to Criminalizing disability by Ed Williams, a reporter for Searchlight New Mexico. Williams asked why so many of the state’s special education students ended up in police custody.

Honorable mention in the small media market category was awarded to Fighting for Personal Attendants at the Texas State Capitol by investigative reporter Edgar Walters of The Texas Tribune.

My remarks at the awards ceremony follow:

“It’s an exciting time for journalism with a disability angle. Next year we’ll celebrate thirty years of the Americans with Disabilities Act with its goals of equal access for the 19% of us who live with disabilities to government, business and employment. Have we achieved equal access?  As the stories we honor tonight point out, Not Yet!

Stories about abuse, neglect and discrimination are not pleasant to read, but they make us aware of the realities of life for many and can rouse us to do something about these troubling realities. As Martin Luther King said: “The arc of the moral universe is long but it bends toward justice.”

Accurate journalism that goes beyond the latest cure for a disabling condition and beyond the narrative of a supercrip overcoming a disability can help  bend that arc toward justice. A story about the new disability emoji created this year or Target’s Braille Uno cards or Barbies with disabilities can make people realize disability is a part of life, not something to be hid but also not the whole story. Journalism can highlight that more people with disabilities are pictured in movies and on television; more people with disabilities are running for office and more companies and organizations see us as consumers.  That’s good journalism.

The work of the NCDJ like the style guide and these awards is important work. I’m happy to report that the committee that picks the award winners tells me that their work gets harder each year. This year they reviewed over a hundred pieces of journalism from all over the world. . .”

When I’m giving disability issues talks, I’m often asked “Because of the ADA and other laws, are things getting better?” My answer is some version of “yes and no”.  Here’s this week’s version:

  1. Unsafe situation on nearby corner of busy street

The mile long reconstruction of an arterial road near my house just finished.  Drivers are breathing a sigh of relief about not having to drive a couple extra miles to get around the construction.  I walked part of the reconstructed sidewalks with a friend who used to teach blind kids and she pointed out that on one corner the truncated domes (bumps) were mis-applied. They’ll launch blind people kiddy-cornered from the northwest corner of the intersection to the southeast corner. I immediately notified a staff member in the city’s engineering department and she replied that she’d turned it over to the project manager and would get back to me with an update when available.  Being concerned that soon the snow will fly and it won’t be able to be fixed until next spring or summer, I notified the city manager. He has not gotten back to me yet.

  1. Unreadable obituaries:

When you reach the age I have, you start checking the obituaries as regularly as you have that first morning cup of coffee.  Recently the local paper switched their provider of obituaries and they’re no longer accessible to my screen reader.  When I contacted the local paper’s representative, they gave me the email of the help desk of the new provider. I emailed them and offered to work with them to fix the problem. No word back yet.  My work around is to ask a sighted friend who reads the paper to let me know if anyone she knows is listed in the obits.  Not the same, but better than nothing.

  1. Inaccessible library app:

The public library is touting an app, Libby where one can download audio and e-books on your iPhone. I downloaded it and opened it to a “secret” message to Voiceover users (meaning it wasn’t printed on the screen for sighted people to see, but just audio) that the app wasn’t accessible to us and we should use Overdrive app instead. After several emails and phone calls to the public library, they raised the complaint with the library system who will raise it with the vendor. On the company’s website I read that they’re “working hard” to make Libby accessible, no timeline given. I put a comment on the CEO’s blog since I couldn’t find his email, but have no way of knowing if it was read since I haven’t heard back. There’s plenty of responsibility to be spread around on this one: e.g. why did the company knowingly market an inaccessible app? Why did the library system buy an inaccessible product?

  1. Disability emoji’s launched in version 13.2 for iPhones and iPads:

For over a year, we’ve been hearing that some disability emoji were coming soon to iPhones and iPads. They have arrived, including persons with “cochlear implants” “probing canes”, “guide dog” and “service dog”. I’ve never heard a long cane, also called a white cane, called a “probing cane”. Others in the disability community point out that many disabilities including cognitive disabilities don’t get an emoji. I also notice some of the other new emoji give the person a high status profession “nonbinary judge” or such, but we just get a disability. Am I happy? A little! (Insert emoji of slightly smiling face in your mind)

I was reading Kushner’s excellent Nine Essential Things I’ve Learned about Life. He has a theology of “not yet” that I really like. Are things all better on the accessibility front? Not yet, but that may happen someday if we all keep plugging away on it.

 

(Edited version appeared in on cyberbullying.org)

                I was born blind and grew up in public schools. Hurtful teasing, bullying and shunning were parts of my growing up as was a very low self-concept. I hated being blind. All I knew to do was say the old saw about “sticks and stones will break my bones” and tell the bully to “shut up”.

Thankfully some things have changed,  although the Pacer Center statistics say bullying is two or three times more common for kids and teens with disabilities than the non-disabled. The online world adds wonderful access to resources and communities, but also new places to be bullied. The playground got larger!

There are laws like Section 504 and Title II of the Americans with Disabilities Act. There are resources for parents, professionals and teens like the Pacer Center’s National Bullying Prevention Center www.pacer.org/bullying and http://www.pacerteensagainstbullying.org  Parent support groups for parents of children with disabilities and social support/skill building groups for teens with disabilities exist. Memoirs like Temple Grandin’s Thinking in Pictures, and Mark Zupan’s gimp help teens know it will get better. Books for children and teens are available in alternate formats from www.bookshare.org so that those who don’t read regular print can know they’re not alone and learn ways to deal with the bullying.

Some things have not changed. A disability does make its owner more vulnerable because whether it’s physical, cognitive or emotional, the person has some limitations that a non-disabled person does not have. Those who bully look for differences and weaknesses. Parents, teachers, paraprofessional aides and therapists need to talk honestly with the child about acknowledging weaknesses, learning social skills and accentuating the child’s strengths. If the child can’t outrun the bully, can they use their verbal powers to use humor to diffuse the situation, say a loud and clear “no” or surround themselves with friends who can deflect the bully’s attention?

Denial at some levels still exists about acknowledging what a problem bullying is for people with disabilities. When I was shopping my children’s book Your Treasure Hunt: Disabilities and Finding Your Gold around looking for a publisher, several editors suggested I take the page out of it about what to do when bullied, because “that doesn’t happen anymore”. Parents fear to ask their child if they’re bullied partly because they know they will be furious if the answer is yes.  All that good advice about staying calm and not swooping right in to solve the problem goes right out the window when it’s your child, especially your child who has a disability.  Listening and giving verbal first aid “That is wrong”, “I’m sorry that happened” or “I’ll help if you’d like” is the way to go. Help the child brainstorm about what needs to be different next time and role-play techniques to use. Modeling compassionate but firm problem-solving teaches more than lecturing or ranting.  Help the child ask for the assistance they want. You are teaching skills that will last a lifetime.

Bullying of the disabled (and bullying in general) does not end with graduation.  Recently I had two encounters with a female bully that I needed to work with on a project. Bystanders were as shocked as I was and did nothing. The first time I froze, but by the second time I had a caustic verbal retort ready. The bullying has not recurred since then.  As I was preparing this blog, I came upon a book by Melody Beattie, Playing It by Heart about how to not fall back into being a victim that I plan to read. Writing this blog and my children’s book are also therapeutic in that I can help create a world where there is less bullying and more kindness and empathy. Together we can make a better world. I’d love to hear from you by email and/or at my blog https://kathiecomments.wordpress.com

After seven and a half years of work, Luna is ready to retire.  She’s slowing down and having a bit more trouble getting in and out of vehicles. She has a wonderful home with a couple acres of fenced yard to play in and a retired couple with a black Lab for company lined up.

So I start the several month process of applying to Seeing Eye for retraining.

My medical form has been received by Seeing Eye and my walk with an instructor was just successfully completed. I walk a little slower than I did seven years ago, but nothing else has changed.   If this was a baseball game and getting Young and Foolish was a home run, I’d say I’m solidly on second base. But then I happened to notice what Urban Dictionary says “first base” means, “making out and second base is…”   trust me, this process is not like that!

It’s a huge loss to say farewell to such a sweet, smart, intuitive creature. I’ll see her after her retirement and she may come back and bunk here when her new people are traveling, but she won’t be with me all the time.  As so often happens, in my inbox this morning was the perfect message, a Henri Nouwen meditation on dealing with hurts.  In part he said:

“You have been wounded in many ways. The more you open yourself to being healed, the more you will discover how deep your wounds are. . . . The great challenge is living your wounds through instead of thinking them through. It is better to cry than to worry, better to feel your wounds deeply than to understand them, better to let them enter into your silence than to talk about them. The choice you face constantly is whether you are taking your hurts to your head or to your heart. In your head you can analyze them, find their causes and consequences, and coin words to speak and write about them. But no final healing is likely to come from that source. You need to let your wounds go down to your heart. Then you can live through them and discover that they will not destroy you. Your heart is greater than your wounds.”

That’s the next step of the journey for me.  Luna is starting to send me ideas about getting blessed at IM church her last time there, etc. She’s so intuitive, I’m pretty sure she knows change is coming.  Last night she and Mack (a retired Leader Dog) were sprawled butt to butt on a friend’s long sofa, so Mack may well be her retirement coach. If all goes well, I could be in New Jersey in January. If they have snow, I’ll get to practice working in snow before we return to Wisconsin which I’ll guarantee will have snow.

Wish us luck and strength.

Kathie and Luna

The theme of the Inclusive Ministry church this month was the rainbow that God gave Noah after the flood as a sign to all of us that He is with us.  I started thinking about how I would explain the rainbow to one of our worshipers who is autistic and blind. I’ve never seen a rainbow myself and just dealt with it enough to know the colors in order and learn its shape so I don’t sound ignorant living in a sighted world. But as I thought more about it, it began to bother me: God gave this sign to sighted people, what did he give to us blind folks? The answers I’ve come up with so far are the feel of sunshine after a storm, soft breezes and the sound of a chorus of different birds all singing after the storm.

I was reminded of God’s generosity through the generosity of a friend that bore fruit this week.  When I turned seventy I got a big box of silly stuff from a friend including lots of raisins.  I re-gifted them to another friend who also turned seventy and was having knee replacement surgery. I suggested they’d help keep her regular and she reported back that indeed they worked! Only those of you who have been stopped up after surgery will truly know what a gift this was!

The gift from God that Luna’s presence in my life has been over the last seven years is coming to an end.  She’s having more trouble jumping in and out of cars and her work is uncertain some of the time. She’s nine and a half, so about retirement age. I’ve completed application forms, including a tuberculosis test and medical forms. I’ve found a fine potential home for her with a huge fenced yard and another Lab for company. Now I’m in line for a Seeing Eye instructor to visit and walk around with me to determine my needs. Somehow I’m guessing I’ll get invited to school in the January class.  Many people don’t consider New Jersey in January to be their top choice, but I’ll go with it because at least we’ll practice walking in the snow before returning to Wisconsin in the winter.  I’ve retired and retrained with New Dog many times, but it doesn’t get any easier.  Even though I’ll be able to visit Luna, I’ll miss her constant intuitive, intelligent and teasing presence.  I’ve talked to the pastor of the IM services and she will get a send off in one of those services as befits one of God’s beloved creatures.