On St. Patrick’s Day I fell on my nose and I hadn’t even been drinking green beer. I only got a couple scrapes and a strange look from Luna like “why did you do that?” to which I had no answer. We were on our way to confession and didn’t even say any words I needed to confess. The next day, looking like a battle-scarred lobbyist, I went to Madison.

Here’s Luna’s summary of our twelve-hour trip to Madison to lobby our legislators about not cutting public broadcasting so drastically:

We went, we sniffed and we lobbied. Kathie talked about how cutting a gem like our public radio and television was massacring a state treasure, talk talk talk. The legislators and their aides were polite and noncommittal except that they genuinely enjoyed me. But the best part of all was meeting a gaggle of fourth grade girls and their teacher from Mineral Point in the ladies room. They’d read a story about guide dogs and meeting me in person was way cooler than meeting the governor. And we picked up a copy of the resolution the legislature had just passed in honor of military working dogs. They get their own day! Wonder how they’d lobbied!

Of course there were the usual chores like grocery shopping as well as keeping up with emails, phone calls and Facebook, giving a talk to elderly church ladies, playing bridge, making meals, entertaining friends and reading Superfreakonomics for an upcoming book club discussion. This necessitated some background research to figure out why parts of the book bugged me so. No plot spoiler, but rational decision-making is stressed with morality discounted entirely. A retired guide dog came to spend a few days and Luna only had one meltdown about being bossed around by this assertive older sister. That resolution about war dogs has a couple teeth holes in it now; interesting choice of paper to chew!

I visited friends in an assisted living facility and took fudge for our tea time treat. People got reminiscing about how fudge made them think of being on vacation. Both staff and friends seemed to enjoy this minivacation where you didn’t have to pack or unpack. Note to self, do this again soon.

On the following Monday a noble friend drove me through a snowy morning to testify at the Joint Finance Committee’s budget hearing in Rice Lake. Every two years the legislature has four of these hearings so citizens from all over the state can talk about what budget issues are important to them. Hundreds of people line up early to be able to speak for two minutes.

I talked about cuts to public broadcasting, the university system and the elimination of Aging and Disability Resource Centers and their boards. ADRCs provide local access to services for elderly and disabled and some local oversight. Many people testified about long-term care changes, cuts to public schools and deep cuts to the university. The most compelling testimony prizes in my opinion went to a redheaded thirteen year-old girl adamant about what the school cuts meant to her and a gal who spoke using her iPad to voice her testimony about long-term care. The iPad user was passionate about how her long-term care had enabled her to make choices about her life. She got the only chuckle I heard when she mentioned that occasionally she went to the bar because after all, this was Wisconsin. I hope hearing from real people helps our legislators realize their decisions affect lives. Or as Henry David Thoreau says: “Goodness is the only investment that never fails.”

That was the week that was!

Once again at the midwinter meeting of the American Library Association, along with other children’s book awards, the Schneider Family Book Awards were announced for books with disability content. A jury of children’s librarians chose from among many fine books the following:

Young Children’s: A Boy and A Jaguar by Allan Robinowitz
The renowned cat conservationist reflects on his early childhood struggles with a speech disorder, describing how he only spoke fluently when he was communicating with animals and how he resolved at a young age to find his voice to be their advocate.

Middle school: Rain Reign written by Ann M. Martin
Struggling with Asperger’s, Rose shares a bond with her beloved dog, but when the dog goes missing during a storm, Rose is forced to confront the limits of her comfort levels, even if it means leaving her routines in order to search for her pet.

Teen: Girls Like Us written by Gail Giles
Graduating from their school’s special education program, Quincy and Biddy are placed together in their first independent apartment and discover unexpected things they have in common in the face of past challenges and a harrowing trauma.

Certain kinds of books are unfortunately not eligible for this award. A young adult novel by a friend of mine, Cecelia Zorn Angels Don’t Get Tattoos about a young woman dying of cancer and her friends and family couldn’t win but I’d add it to your short list. It’s far more believable than Fault in Our Stars in my view. In any case, some good books to add to your reading list if you are interested in children’s literature.

National Public Radio talked about some of the children’s book awards including the Coretta Scott King award, but not the Schneider. The We Need Diverse Books initiative makes a good point, but even they don’t talk much about books with disability content. Disability as diversity is just starting to get noticed.

We’ve come a long way from when I was a child and biographies of Louis Braille and Helen Keller were about all that was out there. I’m proud that the book awards I started are helping bring notice to the life experiences of the 19% of us with disabilities.

Here’s to good reading!

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,500 times in 2014. If it were a cable car, it would take about 25 trips to carry that many people.

Click here to see the complete report.

Feeling the need to get wiser, I decided to challenge myself to read fifteen books in 2015 that had some spiritual significance. When I told my Tuesday morning book club of elderly ladies who serve as my models of aging with grace and style of this project, they decided to also challenge me that they as a group would read fifteen spiritual books as well. Here’s my January report:

As T.S. Elliott said: “The only wisdom we can hope to acquire is the wisdom of humility.” The vagaries of Trivia Crack keep me humble. Just when I’m on a roll, I get a visual question like who’s picture is this? I like reading novels like Somewhere Safe with Somebody Good by Karon that mirror my realities of adjusting to retirement. Or How It All Began by Lively that points out our connectedness and how the perceptions of time change with age.

Because it’s the 25th anniversary of the Americans with Disabilities Act this year, some of my spiritual reading is focusing on my disability identity. The Church of 80% Sincerity by Roche by a man with a facial deformity points out that sometimes our gifts and our flaws are the same thing. Including People with Disabilities in Faith Communities by Carter talks about the struggles I and millions of other people with disabilities face when we go to worship; struggles of theology, access and community.

As The Treasure Principle by Alcorn points out, we’re just the money managers, or managers of our time and talents for that matter. They’re ours to share because all we have is gift. So share away, dear blog readers! I’d love suggestions of books to put on my fifteen for ‘15 reading list.

I love word games and trivia. I’m not saying I’m particularly good at either, but let the games begin. Especially when the temperatures are below zero!

For a trivia game on my iPhone to be accessible, it must read questions, read answer possibilities and be untimed. Ideally it would also tell me whether I got the question right and what the right answer is. Free would be nice too, but once I’ve ascertained it is accessible, I might even part with a few bucks to play.

So far, Trivia Crack and Knowledge Trainer are kind of winners. Trivia Crack is a multi-player game and doesn’t voice the right answer. Knowledge can be played by oneself and at least says “wrong” when you are. I have an email out to the developers of Exquizit to ask before I plunk down $.99, but have received no answer in a week. I decided to make the big purchase and it turns out that the questions read but not much else. Hiss!

Word games must voice the letters and be simple to fill in. Dragging and dropping is too hard in my opinion and so is remembering a Scrabble board display full of letters. I want to develop my mind, not blow it. Best option so far is Clever Clues which is free. Seven words is fun, but the one that is accessible costs. Braingle is free and has all sorts of word, logic, math and other fun puzzles. Little Riddles is fairly accessible.

So I’ll hunt down friends to challenge on Trivia Crack and hope my addiction doesn’t leave Luna waiting too long for her next meal or walk.

Why play? I learn something, like what a Catherine wheel is—a kind of fireworks. And I’m doing what other folks are doing for fun. About half the third graders in a class I spoke to said they liked Trivia Crack and I just read three million people are playing it. I did not compare scores with the third graders!

Getting together with friends, whether at an assisted living facility where some live, an Indian fast food joint at the mall, quick before it goes out of business, or around my table for lunch or tea and cookies.

The music of Christmas: a youth symphony concert, a lessons and carols service at church, Pandora’s Christmas playlist…

The food of Christmas: lefse, creamed herring, homemade krumkake, oyster soup and of course Christmas cookies galore.

Baking: coconut scones with maraschino cherries in them was my invention for this year.

The poetry and stories of Christmas: a friend shared “What the Donkey Saw” by U. A. Fanthorpe and “A Cup of Christmas Tea” by Hegg.

My sentimental read this year was Being Santa Claus: What I Learned about the True Meaning of Christmas by Jonathan Lane and Sal Lizard.

The dogs of Christmas: Leader Dog pups came to visit and Ivanna (my retired guide dog) will come for a sleepover to help watch for Santa Christmas Eve.

Advent: complete with an Advent calendar a friend made with the little pockets with candy in them numbered in braille and the church booklet provided electronically by the publisher without any hassle!

The letters of Christmas: hearing from people I’ve known for years about the joys and sorrows of their year; sending out my letter electronically but not being techie enough to realize the photos in it didn’t go. The recipients got to experience my world complete with descriptions of pictures but no pictures! Oops!

Brailling letters from Santa to two blind kids: Santa even shared a joke: “What do you get when you cross a snowman and a vampire?” Answer: “Frostbite!”

The gift-giving of Christmas: being able to deliver at least one perfect gift, a bag of Oreos to the priest whose grin stretched from ear to ear.

The memories of Christmas: the year I was twelve and got a parakeet for Christmas is one of my favorites.

The smells of Christmas: pine wreaths and trees, baking, candles…

Wishing you all the sights, sounds, smells and warm memories and feelings of the season.

People around the world marked December 3 the International Day of Persons with Disabilities (IDPD) by lectures, performances and by blooming where they’re planted as the saying goes. Worldwide it is estimated that a billion people have disabilities.

All around the world, people are encouraged to get together to celebrate disability identity. IDPD has been observed annually by the United Nations since 1992. It promotes disability rights and the benefits of integrating disabled people into all aspects of life. Of course the celebrating is not limited to the 20% of us who have disabilities but is open to the 80% of people who are our nondisabled friends, family and allies too. Read http://www.bbc.com/news/blogs-ouch-30290656 to see what happened around the world.

In addition to Facebooking it ahead of time, I brought it up at my church’s Peace and Justice Committee meeting this morning. I mentioned disability concerns as we discussed immigration issues; e.g. if we need drivers’ cards for undocumented drivers, we also need non-drivers cards so undocumented folks who cannot drive can still have some identification for cashing checks, etc.

After supper I’ll celebrate by reading some more of Grisham’s newest legal thriller Gray Mountain. To be able to download and read a best seller while sighted friends are also reading the book is something that didn’t happen ten years ago. Progress is never as far or fast as I’d like it to be, but there is definite progress worth celebrating for us in the 20%.

As Gandhi said: “Be the change you wish to see in the world!” I’ll add: “and celebrate the change you see.”

h

Happy Thanksgiving and               what’s It All About?

 

Never let it be said that this blog is afraid to tackle The Big Questions! Lately there have been several public entries in the ongoing discussion of the meaning and purpose of life and when it should end.

Brittany Maynard ended her life at age 29 because she had aggressive brain cancer and did not wish to live through the inevitable pain and debility. In October’s Atlantic Monthly, Ezekiel Emanuel wrote about “Why I Hope to Die at 75”. He picked this age (eighteen years in the future) because on average he’ll still be mentally and physically functioning at a level he deems satisfactory. He says that he’s against euthanasia and assisted suicide, but will just refuse any treatment when he reaches that age.

Both these individuals do us a great service I believe by making us think about the meaning of our lives and when is enough enough.

So does Rebecca Alexander in her memoir Not Fade Away: A Memoir of Senses Lost and Found. She’s a psychotherapist in her ‘30’s living with Usher’s Syndrome which means she’s almost blind and almost deaf nowadays. She writes about what she’s lost. But she also writes about   what she’s found in return–an exquisite sense of intimacy

With those she is closest to, a love of silence, a profound gratitude for everything

She still has, and a joy in simple pleasures that most of us forget to notice.

I hope as I suffer the losses that aging so often entails that I can look for the gains as Alexander does. Her “life is a gift so savor the gift you have been given” attitude (my words not hers) is inspiring to me. My communications with my Higher Power so often involve “thanks and I’d like…” I don’t say “I’ll quit if I don’t have health, wealth…” but I also don’t promise not to gripe.

So Happy Thanksgiving! After consuming that last sliver of pie, happy ruminating!

 

 

 

I just got back from a short trip to AZ to see the second annual Schneider Disability Issues in Journalism awards given. www.ncdj.org Luna is a great traveler, a good guide and a wonderful icebreaker. But I’m amazed; she’s also my moral teacher as well. Consider the following:

The Gospel reading today is Luke 14:25-33, which talks about hating your possessions and working out your salvation in fear and trembling. The priest talked about hating meaning not letting possessions interfere with our following Christ. Yesterday Luna and I were in the Phoenix airport waiting for our plane home. A little boy had a remote-controlled helicopter which he zoomed over to bump Luna. He then commenced to make it zoom close to her and away from her to get her attention. She was interested for a bit. Seeing Eye training did not include what to do in this situation! After a bit she got up turned around and put her back end toward the temptation and lay down. Clearly she said without words “I’m not going to let this distract me from doing my job.” After a couple minutes the child tired of bugging her and went away. If I could only do as well at turning my back on things that distract me like elections that don’t go my way!

Our priest explained that the “fear and trembling” in Luke doesn’t mean God will get you if you’re bad, but trembling in eagerness. On our journey home I dug out of my pack my two-course lunch of nuts and chips. Luna sat up and fixed her gaze on every chip on its journey from the bag to my mouth. I didn’t notice if she was trembling but she sure was eager. She did get one! Perfect behavior on a ten-hour journey needed rewarding even if the general rule is no people food. If I could devote the concentrated attention she gave to watching me to doing the Lord’s work, that would be a good thing.

Thanks for the example, Luna. I know, I know, dog is God spelled backward!

My usual response to being treated as invisible, whether because I’m blind or a senior citizen is anger. But clearly other responses are possible. Consider these books:
In Invisible by Lorena McCourtney, “feisty senior citizen Ivy Malone decides to use her newfound anonymity to catch cemetery vandals in the act. She witnesses a sinister crime and puts her investigative prowess to work,” according to a review on Bookbub.

Or in Bat Loves the Night by Nicola Davies, just published in print/braille by National Braille Press, the bat uses darkness to her advantage to hunt by echolocation.

Invisible Man by Ralph Ellison and many young adult novels share my more painful feelings about invisibility and being overlooked because of belonging to a minority group. In some ways we stick out like sore thumbs, but in other ways we’re overlooked like we’re invisible.

Invisible: A Memoir by Hugues De Montalembert is the impressionistic memoir of an artist who was blinded in a sudden act of violence, leading to his meditations on what it means to see and be seen. As he says, “Yes, close your eyes, you will see what light renders invisible.”

Invisibles: The Power of Anonymous Work in an Age of Relentless Self-Promotion by David Zweig promotes taking pride in what you do whether others notice or not.

Recently when I was not introduced as an author when all other authors in the room were introduced, I was deeply hurt and angry. As I pondered what to do, I considered the hazards of confronting the person, retaliation and/or a brush off of “Oh, I didn’t see you.” As a psychologist, I know how hard it is to look inside at hurtful behavior and I wrestled with how to say what I needed to say in a way that would invite introspection. Am I being overly sensitive?

To take a break from this quandary, I emailed Public Radio Exchange about the total inaccessibility of their wonderful Public Radio Player app to voiceover users. All voiceover can read of the opening screen is “page 1 of 4”. Imagine how hard I’m drooling! Personal invisibility is hurtful, but invisibility of a huge group of us is intolerable. I emailed the help desk but when I went on the Public Radio International website (the parent company I think) to email them, their form had a visual CAPTCHA. Now I’ll have to wait until I have a sighted reader to help me email them and will add the CAPTCHA problem to the email.

Off to Mass to get inspired. The Gospel today is from Luke “gird your loins and light your lamp”. So I’m supposed to gird my loins to deal with the hurt of invisibility and light my lamp and advocate for visibility.

I checked the meaning of “gird” on dictionary.com and it means “prepare for action”. So I pray, nap, walk in the leaves on a beautiful fall day, use NPR and PRI apps that are voiceover-friendly to catch up on news and await email back from Public Radio Player help desk. Sigh!

Follow

Get every new post delivered to your Inbox.

Join 196 other followers