What do you think when you hear someone scored one out of three?  In baseball, that’s a great batting average, on a school test it isn’t even passing.  Today one advocacy issue came to a happy conclusion and two more didn’t.

The President has signed into law: …

  1. 2559, the “Marrakesh Treaty Implementation Act,” which provides for the implementation of the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled.

This is great news for blind and visually impaired people from all over the world! All of us who truly love to read are so pleased this treaty has finally been ratified. More books will be available no matter where one lives.

On the other hand, I stumbled on a piece of county code law that apparently says one cannot attend county meetings electronically.  The fear is someone else could call in and pretend to be you and cast a vote without them being sure you did it. How many people would care to listen through county board and committee meetings just to make one vote is questionable. This item came to my notice because the ADRC board was creating a committee on which one recipient of Meals on Wheels for the “homebound” was supposed to serve or someone who had a family member on the meals. But it goes deeper to me because if we want our government to be truly representative, we need divers voices including those of people who can’t leave home much.  This should be an issue that the ADRC would champion; I’ll lead the charge.

Then I heard back from the university’s facility director that the university won’t put a rumble strip, truncated domes strip or anything to tell blind people when they’re walking off campus right on to a street because the ADA does not require them to do so. Nobody I’ve discussed the problem with thinks it’s a bad idea and many are all for it, so it’s a matter of finding out who can wield enough power of persuasion to get the university to do something they don’t have to to keep students, staff and visitors who are blind safe.  Sigh! I wrote a letter to the student newspaper about advocating for this in honor of the upcoming White Cane Awareness Day.

I feel too tired to celebrate the one out of three, thinking of the two that remain. That’s just one day’s haul of issues!

p.s. But then a fun little fourth problem came along: the ear buds I use to listen to the talking ATM get all tangled up in my purse. A friend told me to wind them around a cork and push the jack into the end of the cork. I immediately sent out an SOS to my wine-drinking friends about my need for their next cork. I’m confident this one will be solved quickly.

 

 

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Up Where We Belong by Joe Cocker
“Who knows what tomorrow brings
In a world few hearts survive
All I know is the way I feel
When it’s real, I keep it alive

The road is long
There are mountains in our way

But we climb a step every day
Lord lift us up where we belong
Where the eagles cry, on a mountain high
Lord lift us up where we belong

Far from the world below, up where the clear winds blow
Some hang on to “used to be”
Live their lives looking behind
All we have is here and now

All our life, out there to find
The road is long…”

Sometimes a song just grabs you and it’s your theme song for a while.  This song grabbed me early this week when I heard it in a NPR story about Buffy Sainte Marie.

Monday: A trip with friends to see the new Military Working Dog statue at The High Ground. A carload of people with varying disabilities and abilities takes off for a road trip on a rainy October day, prepared to picnic outdoors and walk around a remembrance park for veterans.  We ended up dodging between rain squalls long enough for me to climb up and touch the dog sculpture—a proud German Shepherd on full alert with his soldier.  Even the rough thick fur on the dog’s chest was well-sculpted.  We ended up at home for an indoor picnic afterwards full of laughter and good feeling. Everybody’s disability needs were cheerfully accommodated. These are the kind of friends who even say something positive about my kale burgers!

“Who knows what tomorrow brings” but we’re all hopeful another road trip will happen for this crew.

Wednesday: Five events in one day: cooked two meals for friends, chaired a committee meeting, went to a workshop and did my month’s grocery shopping.  The workshop was on the similarities between improv comedy and dementia care giving. One of them was living in the moment. No time to ponder just enjoying the people at each activity. “All we have is here and now” and it was good!

Suggestions for care giving included saying “yes and” instead of “no” and not dwelling “in the house of guilt.” Of course the usual self-care ideas of accepting help and finding easier ways to do things were also mentioned.

Saturday: As I went to the farmers’ market with a friend, we exchanged tales of woe about household disasters. She called it “Queen for the Day” competition. My entry included: a black screen on the computer that would not talk at all so I didn’t even know it was black until she told me, an iPhone that needed to update twenty apps because I’d updated the IOS and a garbage disposal that quit working (on a weekend of course).  Her entry was smelling something dead in her kitchen. It turned out it was a dead mouse floating in a vase under the sink. The vase had caught most of the water from a leaking sink pipe. I believe she wins just because of the image of the dead mouse floating!

“There are mountains in our way
But we climb a step every day
Lord lift us up where we belong.”

P.S a new children’s book “Lorraine: The Girl Who Sang the Storm Away” by Ketch Secor carrier this theme of a song bringing you through troubled times. Synchronicity lives!

 

 

 

 

Since it’s September and the World Series is coming up, maybe I can get away with making a baseball analogy for my angst.  My issue is that I often don’t get beyond second base in inclusion in groups and organizations.

To me, the bases are as follows:

First base: I show up and am not excluded and may be casually welcomed at a group event. No attempt is made to get to know me.

Second base: I figure out what I can do to help the organization, volunteer and efforts are accepted.

Third base:  I take charge of some area and/or start working to make the organization more inclusive of people with disabilities.

Home run: I’m welcomed both for what work I do but also as a person with disability accommodation needs like rides, help through the potluck line, etc. I’m known and embraced.

I seem to get stuck on second or third base. But I want the home runs! I want the Tigers to make it to the World Series too, but that seems to happen only once every twenty years or so.

Attacking the problem as I usually do, I did some reading. The best book I found was Belong: Find your People… by R. Agrawal. She talks a lot about doing the inner work to figure out what and why it isn’t working. Is it fear of missing out or fear of being left out that you feel? One of her rules is the 80/20 rule that if 80% of the time it feels good and like both you and the friend you’re thinking about are putting equal energy into it, then it’s a productive relationship; otherwise, re-evaluate it.  The only area that I might need to work on from my initial “gentle self-awareness” based on this book is vulnerability. She says that you need to be “vulnerable, intentional and courageous” to make belonging happen.

I fear being too vulnerable about disability accommodation needs early on for fear that I won’t make it to first base.  The balancing act of presenting myself as someone with gifts to offer but also needs is a tricky one for me.

Her ideas of being a five senses friend and ways to be playful in friendships and organizations and groups gave me some good ideas for the IM church project I’m involved with.  And her emphasis on gratitude reminded me that I am very grateful for the friends and groups I have. This week I dine out with two different groups and have a book discussion with another group.  Several home runs in one week. Maybe the Tigers will make it to the play offs too—or maybe not!

 

What would you think if you heard “128522;” in an email?   

Would you have guessed it’s a smiley face?  In some speech programs instead of being read as “128522;” it reads “symbol 74 field”. Now consider :), which is read as “colon right paren” The student who reads to me is shaking her head, trying to explain to me the different kinds of smiley faces.

The program on my desktop computer called JAWS that reads aloud everything on the screen reads “bang” when I type an exclamation point. Now enter the world of emoticons and emoji’s. Emoticons have been around since 1998 and now there are over 1,800 emoji available. For those of us from before emoji times, an emoji is a small digital image used to express an idea, emotion, etc. in electronic communication. Emoticons are the symbols like the smiley face that started this rant.

On the desktop computer that I’m using which has Windows10, there is no easy way to use emoji’s so I’m stuck with emoticons. I can search out the emoticon of choice from Wikipedia, if I’ve got all day and copy it into my email. Or I can write the words in parenthesis and hope sighted readers imagine it (winking face).

Using my iPhone with Voiceover turned on,  the world of emoji’s opens up to me. They are labeled with text so I can dig through the category “animals” for example to try to find an emoji of my beloved crow. Unfortunately, they are not in alphabetical order. People with low vision are more likely to use emoji’s because they can see and enjoy them using magnification software on their smartphones. All of us can use the dictation software but sometimes this produces the emoji and sometimes just the words. Never could get that crow to show up! I searched www.emojipedia.com for the crow and didn’t find it or a raven or even a blue jay, so I guess a parrot will have to do for the moment🦜 Oops, all that shows up for you sighted folks is an empty square my human reader tells me since I’m writing this on a Windows10 computer.

So those of us who are disabled don’t feel left out, earlier this year Apple proposed 13 new disability emoji. The proposed emoji’s include an ear with a hearing aid, a person in a wheelchair, a prosthetic arm, a service dog, and a person with a cane. So far I haven’t been able to find these labeled so voiceover will read them. But I’m working on it!

I realize sighted people are not totally clear either on what each emoji means. For example, the Information Desk Person.infodesk2-5a79dd2631283400361a1b4e.jpg

Most people call it the “hair flip” emoji because of the position of the girl’s hand. It’s become trendy to use this one in a message when trying to be sassy or cheeky.

What it actually means is the girl’s hand is positioned the way it is so that it expresses helpfulness, as if she were asking “how may I help you?”

iDiversicon is an app for adding more diverse icons to your communications, including many disability icons http://bitly.com/DisEmoji. I was too cheap to buy before knowing if my screen reader would read them and the creator did not answer my email question before press time. If you know, let me know. We keep learning, don’t we? 

Labor day makes me think about work and play and how they mix in retirement. Here’s a piece I wrote for a local reading.

Hi, my name is Kathie and I’m a recovering workaholic. As a blind child growing up in a sighted world, I concentrated on learning to excel academically. With parents who’d grown up during the Depression, play was not a big part of their worlds either. Learning to play has been a lifelong adventure.

With very high unemployment among people with disabilities, it’s no wonder my mom was a Tiger Mom about being all I could be academically. Before the word Tiger Mom was invented, she demanded that all homework be completed before there was any playing done.  My dad brought home a briefcase of work to complete every night modeling work before play.

It takes extra planning and adaptive equipment for me to play as well.  I can’t just go to a game store to pick up a Scrabble set or Sudoku book, but have to search out an online store that sells Braille versions. Going on vacation to swim with the dolphins involved finding a site that would let me swim and arranging friends interested in swimming with me and watching my Seeing Eye dog while I swam. Even participating in a book club involves persuading the other members to choose books that are available in accessible formats.

But when accessible play opportunities happen, it’s grand. The first time I watched a movie with descriptive audio added, it was fabulous. I knew who got shot! Scenes were beautifully and succinctly described. Finally I knew why people enjoyed going to movies.

My only sporting experience was being on a mixed sighted/blind bowling team forty years ago. Blind bowlers line up trailing a rail with one hand as they walk up to the foul line.   My average was 90, but the camaraderie was great. Now my sports interests run more to games like Scrabble and bridge.

This summer I got to pay back for being helped to bowl  by helping make Eau Claire a bit more blind-friendly to the 400 blind beep baseball players who came here for their beep ball World Series.  I helped train hotel staff in blind etiquette and made sure the visitors got Silver Springs product samples to take home instead of slick printed brochures in their welcome packets.

In the crafting world, I’ve knitted a sweater and crocheted innumerable placemats, but there’s not much joy there for me. I do enjoy vegetarian cooking. Black bean salsa anyone? Ask me for my peanut butter cookie recipe; if you can count to two, you can make it.

Thank goodness I had nine Seeing Eye dogs to help remind me to play. When they roll over for a belly rub or play bow to get a game of chase going, they remind me there’s nothing more important to do right now than celebrating the goodness of just being alive.

Playing with words is fun too.  Recently I entered a contest to create Burma-shave-like poems for a fermentation festival. My best entry was:

The land is beautiful;

The people are gentle.

Wisconsin is great

If winter doesn’t

Drive you mental.

Recounting funny stories about interactions with a sighted world is play to me.  It also helps take the frustration out of the situation.  For example when undergoing the usual extremely thorough screening before flying in Minneapolis, the TSA person demanded to know what sex my guide dog was because the same sex person had to search the dog as the dog was she said. I said she’s a female, so a female searched her. The same sex searcher rule is not true for service animals, but a good example of how all of us make up the rules as we go along when we don’t know what to do.

As I age, I realize I’ll never become a playgirl. I won’t go to the casinos at least until they let me use Brailled cards. I won’t take a zip line across the Grand Canyon.   But having friends over for a potluck with good food, and exchanging funny stories about life is mighty fine. Afterwards I can settle in with a spy thriller almost without guilt for not doing something more productive. I can play!

One of the things I love about retirement is that I can find something I want to do and hop right on it, at least sometimes. This week it was a contest that a fermentation festival in Wisconsin was having. Yes we celebrate fermentation and almost anything else here! The contest involved submitting Burma-Shave-like poetry about the land, nature etc. If you remember the ads, five short lines with the second and fifth rhyming.

Below you’ll find what I submitted. But here’s where you come in.  If you email me yours on any subject you like, I’ll put the printable ones together into a future blog.  The unprintable ones I’ll just enjoy myself. Who said life is fair!  My email address is: schneiks@uwec.edu

Here are my entries to the contest which has already closed by the way.

 

Living here is fine / most of the year/ as long as you’ve got / plenty / of beer.

 

For Wisconsin / Let’s all cheer / Eat some / cheese / and drink beer.

 

The land is beautiful / The people are gentle / Wisconsin is great / If winter doesn’t / drive you mental

 

 

 

Summer is going by way too quickly for my taste. People are already being very generous with zucchinis, which means the end of summer is nigh. A friend who lives out in the country already had a mouse move in looking for winter quarters I guess.  Her two cats can’t get to it, so she’s trapping and losing sleep listening to it scratch in the wall.

Ivanna is here for a ten-day visit while her mom is on an Alaskan cruise. She occasionally poops in the house, which I totally understand for a 14.5 year-old dog. But it does make me leery of trotting around the house.  I’m getting my house painted outside so there’s extra chaos with that. So far I haven’t walked into any ladders or wet paint, but it’s only just begun.   Unfortunately the painter prefers rock music to classical.

Today I greeted at the local soup kitchen while another volunteer counted. Instead of my usual counting partner they let me work with a guy who was hallucinating and talking to folks who weren’t there.  I snagged another volunteer I knew and asked if they’d like to do a second count, just “to be sure we got as high a number as we could” my man with voices got testy and let it be known he didn’t want his job taken away from him.  I took a few deep breaths and gave it to God.  If the count is off, I guess it’s their problem not mine.  Apparently he’s doing this several days a week and the young paid staff aren’t willing or able to say no, go help with the dishes. After a lot of thought and prayer I approached the team leader to ask if we could brainstorm how it could go better for me in the future.

If there’s a theme for these minor complaints, I guess it is not wishing to step in something.  But I hear you saying “Yes, but life is messy.” And so it is. I’ve just begun reading  Messy Spirituality by Mike Yaconelli According to its blurb it’s for those of us who aren’t acting up to our own standards of holiness, not praying right or enough, not as generous as Mother Teresa, etc. Sounds like me. He’s quite reassuring that failing, being stuck and being unbalanced are parts of spiritual growth too.

I’ve worked with the director of a county agency to prepare the budget for the agency since I’m the chair of the board. Talk about messy and hard! Benefits cost more each year and total amount of money available doesn’t rise nearly as much. Doing more with less is just plain painful.

Off to a new shrimp restaurant where they sell you a pound of shrimp with shells in a bag with whatever sauce you pick and no utensils. Now that’s a kind of messy I think I’ll like!

 

 

Have you ever reread a book you hated? I’m rereading The Great Gatsby for one of my book clubs and hating it just like I did when I first read it in high school. Rich people behaving badly just don’t interest me.  Of course I could skip the book club meeting or just slide through on my fuzzy memories from fifty years ago. But I like the people in the group, to say nothing of the home-baked goodies one gal brings and am a little curious if my opinion will change with the age and wisdom? I’ve gained in the intervening years.

Pamela Paul in her opinion piece in The New York Times (written in 2017) says we should read books we hate.  “reading what you hate helps you refine what it is you value, whether it’s a style, a story line or an argument.” The first thing I noticed is how little empathy I have for people I don’t like. True in real life too, I’m afraid. I don’t have to approve of a rich man having an affair, but surely I could find a drop of compassion for the emptiness he feels in his life.

After reading three commentaries on the novel, I did enjoy thinking about the following questions:

Supposedly this novel is about the great American dream. Can I find a better one, not so shallow and futile?  Steinbeck’s Grapes of Wrath comes to mind immediately, but I may need to reread it to see if it’s as good as I remember.

The green light at the end of Daisy’s dock is hugely symbolic (remember high school English!) of those dreams we chase. What’s mine? Yours?

The book discussion was robust including the question of who’s your least favorite character and why.  The English majors among us maintained it was great literature because it was well written and described a particular time and place well.  The rest of us grudgingly agreed and eagerly leapt on finding out what’s next month’s book?

 

This week I finished three projects. I did training for hotel staffs who will welcome 300 blind athletes in six weeks for the Beep Ball World Series. I tested the library’s new Braille printer to make sure it really produced good readable Braille. I wrote a sermon for the first Inclusive Ministries church meeting.  All projects went well—not perfectly of course, but well enough to satisfy someone who always strives for a high grade!

After the flurry of thank you emails to others who’d worked on the projects and either a beer or a chocolate to celebrate, I was still left with a “is this all there is” kind of a feeling. So I read a Finish Strong book by Capen and listened to a podcast on ending with a flourish.  End of project thoughts led to end of life thoughts.

Barbara Ehrenreich talks about how hard it is to come to peace with aging and dying in her newest book Natural Causes. We try to postpone death by exercising, dieting and all sorts of self-help stress management strategies.  We comfort ourselves with religions with an afterlife and think about leaving a legacy and dying for a cause.  I think her preferred strategy is going out rejoicing in the living world. As Billy Graham said he didn’t remember seeing retire in the Bible and he certainly kept charging until he died although in changed ways as his health failed.

Onward!

 

I find it hard to talk about my faith without sounding all churchy. I volunteered to do the first sermon for an inclusive ministries worship experience we’re offering next month for people with cognitive and other disabilities that may make “regular church” not work well for them.  Here’s what I wrote:

In 1 John in the Bible we read “God is love.” Think with me about what these three small words mean to each of us.

I love my Seeing Eye dog Luna. By the way, when you see her, ask me if you can pet her before petting her please. I show her I love her by feeding her, petting her and telling her she’s a good dog and taking her to the vet if she’s sick.

God loves each of us even better than I love Luna. He made you and me, perfect as we are. When people say to me, “if God loved you, he’d make you see” I disagree. In God’s eyes, I’m okay even though I’m blind. I just have to figure out how to deal with being blind like asking for help when I need it and having this beautiful Seeing Eye dog to lead me.

Just like I take care of Luna by feeding her, God gives us what we need to live. He gives us a beautiful world to live in with food and water, and air to breathe. He gives people skills to become farmers to grow food, doctors and nurses to take care of us and veterinarians to take care of our animals. He makes some of us good at music, some good at art and some good at cooking.

I talk to Luna to tell her I love her. God talks to us by giving us the Bible to read and by giving us wise people to help us make good choices. Sometimes I have to tell Luna she’s not doing the right thing. Sometimes God has to tell me I’m not doing the right thing. He tells me by my conscience that tells me what is right and wrong. Sometimes I listen and sometimes not.

Luna loves me back. She shows it by licking me and by doing her job guiding me. She keeps me safe when we cross streets and walk up and down stairs. If I fall down on ice, she stands by me and waits for me to get up.

We love God by loving and taking care of the people around us. We listen to them when they are upset. We stand by them when they fall and help them get back up. That makes God happy.

It also makes God happy when we talk with him. That’s what we call praying. Sometimes we thank him for things and sometimes we ask him for things. Just like Luna asks me for more treats!

So God loves us. We love him back by praying and by doing good things for others.  Thanks be to God!