Parents raise their children with disabilities hoping they will become members of a community somewhere, somehow. When I talk to them about what they’ll need to do to accomplish this, it has elements of being a Tiger parent: tough love, as well as all the time, energy, effort, community support and luck it takes all parents.

Here’s what involvement in my community looked like this week:

  • I received an award from a local group for what I’ve done for children and a certificate of thanks from a board I was cycling off of. None of the materials were provided in accessible format until I requested the certificate be sent to me electronically. For the award ceremony to go off smoothly, I took a friend with me and walked through the trek from my seat to the podium several times. My only melt-down almost occurred as the officials for the award ceremony kept moving the podium (“just a little”) and posed the question “How are you going to go get the crystal bowl after your talk?” at the eleventh hour. That involved a friend coming up and carrying the bowl so I could work the dog and hold on to my speech with my sweating fingers!
  • Having seven groups of friends over for tea, meals, a birthday party, etc. Entertaining is something I can do if I know in time to get what I need at my monthly grocery store run. Just tell me what lights are on when you exit and where you put your cloth napkins! Sometimes it’s hard to think like a sighted person.
  • Reading my poem “Family of Nine” about my guide dogs at a poetry workshop I attended at the public library. The teacher found at least one nice thing to say about each poem. I think I learned what I was supposed to from the assignment: I don’t know what a poem is and it isn’t that easy to write one.
  • Asking several people before securing a ride to the funeral of a prominent local citizen. He served on the city council and at least listened to disability issues I raised.
  • Volunteering this week included playing in a Scrabble Bee fundraiser for a literacy organization, talking to fifty first graders about what it feels like to be different, helping a graduate student improve accessibility of her survey, a phone conference with an intern who is doing a 25th anniversary of the Americans with Disabilities Act display at the community college and reading Scripture at Mass.

None of them major commitments, just part of being a member of the community, giving what I can.

  • My guide dog had to have her teeth cleaned and three teeth extracted. I have a big enough base of friends to get rides to and from the vet and to have people stop by to sit with us as we both whined afterwards.
  • Participating in two book clubs, grocery shopping and trying to keep up with email and Facebook in addition to diving into a new thriller leave me wondering the typical question of retirees: How did I ever have time to work?

So far sixty-six is starting out to be a wonderful age to be. I’ve got it all:

Health:

Both my guide dog and I are in reasonably good health. She has to have her teeth cleaned which means a day out of service. But I have the friends lined up to take us to and from the vet and my retired guide dog will be here the night Luna comes home to nurse her through the post-anesthesia jitters. Last time she had anesthetic she cried for six hours straight coming out of it, so they’re trying a different kind.

Work/volunteering:

This week I gave a guest lecture and hosted a breakfast for a guest speaker. I’m working on a couple upcoming speeches including researching the Daredevil comic with its blind male superhero. I baked cookies for the Friends of the Library book sale volunteers. I’m plugging away getting pictures and objects lined up for the 25th anniversary of the Americans with Disabilities Act display at the university library. I helped lead a book discussion on All the Light We Cannot See. The members of the book club were receptive to my rant on how blindness really is as compared to how it’s pictured in Doerr’s novel.

Friendship:

I’m lucky to have many friends who celebrated my getting older with meals and gifts. The best gifts were their presences to catch up on what we’d been up to and laugh a lot. To spend time with friends is one of the best parts of retirement to me.

Spirituality:

I’m blessed to have a good church within walking distance, Christian and non-Christian friends tolerant of my views and an app to read me the daily Scripture readings. The time to read uplifting books like Ann LaMott’s Small Victories is also wonderful. This year I’m again going to try to read the Bible cover to cover. Last time I tried I got through five books and stalled out. Being 66 and trying to read the 66 books of the Bible seems auspicious, but time will tell.

Play:

Playing bridge and trivia crack keeps my mind sharp. Isn’t that a righteous excuse for having fun! Trying to encourage votes for Fran (my retired guide dog who is losing her vision) to be one of Wisconsin Lottery’s top dogs by using Facebook tested my social media skills. And then there are my spy thrillers and police procedurals. This week I started attending a four-session poetry class at the public library. I’m so glad to live where we have a good public library and in an era when many more books are available electronically so I can read them than when I was growing up.

Of course the world goes on with wars and crises and elections don’t always turn out as I’d like. But so far I recommend being over sixty-five highly! I may even aspire to hitting a hundred and seeing if I can be as astounding as ‘The 100-Year-Old Man Who Climbed Out the Window and Disappeared’.

Tip to blog readers: If you’d like a funny blog on interactions between sighted and blind worlds, try “You’ve Got to Laugh Sometimes: ABAPITA Moments”: https://theoutlookfromhere.wordpress.com/2015/04/09/youve-got-to-laugh-sometimes-abapita-moments/>

Later this month I’ll receive an award from a local group for disability advocacy work I do for children. I’m hoping to activate my listeners to initiate actions to make my town more inclusive. If they find it interesting and/or it helps them initiate action, I’m okay with those “I” words; just not so much with the “inspire” word that gets thrown around about people with disabilities way too much.

Here’s my three-minute rant:

Growing up blind gave me personal experiences of unequal access to information and to other good things of life. This fueled my passion to provide opportunities to people with disabilities. By being mainstreamed in public schools long before it was the norm, I learned to ask for what I needed like not playing volleyball in fourth grade. I asked to do more of the calculations and lab write-ups in chemistry class and less of the pouring of chemicals. These rudimentary self-advocacy skills were easily turned into advocating for others in the 19% of people who have disabilities. Educating strangers in how to help me meet my needs morphed into educating children and adults about disability issues. Add a handsome Seeing Eye dog by my side and the invites to do public education poured in from nursery schools to senior centers.

When I had the opportunity to start the American Library Association award for children’s books about the disability experience, I knew first hand that more good books were needed. From serving on non-profit boards I knew the need for the Access Eau Claire fund I started. To help meet access needs costs more sometimes. Non-profits can apply for a grant to help them serve all including people with disabilities.

As we approach the 25th anniversary of the Americans with Disabilities Act, it’s important to look at who isn’t included in the good life in Eau Claire and how can we help make inclusion happen. We may have achieved most of the curb cuts, wider doors and bathroom changes we need, but we have a long way to go to equal access to information for people who are deaf or blind. Program access for people with a wide variety of disabilities needs improving.

Taking those next steps in providing access takes a Tehabi attitude. In case you haven’t met Tehabi yet, it’s a Hopi Katchina story doll. A Blind man carries a mobility-impaired man and the moral of the story is: you see for me; I’ll walk for you. Tehabi people ask what help is needed or wanted. They think about who’s not represented on the boards of decision makers and how can we get them there. Tehabi people know that although someone has a disability, they also have abilities. Tehabi people accept help as well as giving it because they know it’s not a one-way street. Tehabi people carry us all forward toward a richer more inclusive Eau Claire.

Thank you for being Tehabi people.

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.”

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