NPR recently had a piece on the word hygge as did The New Yorker. It’s on the Oxford English Dictionary’s short list of words for 2016 and Wikipedia has an entry for it.

For those of you, like me, who have never heard of it, details from the NPR story follow. “Meik Wiking is the author of The Little Book Of Hygge, and he is CEO of The Happiness Research Institute in Denmark. Hygge is actually a lifestyle concept, one that’s been around for a very long time in Denmark. What does it mean to live a hygge life? It’s been called the art of creating a nice atmosphere. It’s been called the pursuit of everyday happiness. But it’s basically building in elements of togetherness, safety, coziness, savoring simple pleasures, relaxation, comfort on an everyday basis”.

Since the United Nations has judged Denmark to be the happiest country repeatedly, maybe we should learn about hygge. If you’re in to decluttering, the slow food movement or mindfulness, you’re heading in the direction of hygge. Think candles, slippers and friendly cats. My Labrador believes she was hygge long before it hit The New Yorker.

Sure enough, my public library had The Little Book of Hygge in accessible format. Bookshare had Have a Hygge Holiday (Christmas family saga with hygge themes) immediately downloadable for the print handicapped. After consulting these sources and Wikipedia (of course), I’m going to try some of the following hygge ideas:

  • Microwave single-serving mac and cheese http://www.ellaclaireinspired.com/homemade-single-serve-microwave/
  • Try a couple new podcasts: “Note to Self” and “Still Processing” to listen in on others’ worlds.
  • Work on skimming and discarding ever-growing piles of unread magazines before they take over the living room.
  • Make monthly visits to friends in nursing homes or assisted living facilities taking tea and talk. You bet I’m paying it forward!
  • Say a prayer of gratitude at the end of each day for the gifts of that day.

I wish for you a hygge 2017. And here’s my toast for you: May all your troubles during the coming year be as short as your New Year’s resolutions.

This dark time of the year, many religious traditions have candle lighting as part of their services. Even though I can’t see the flame, this tradition of bringing light and warmth to people makes a lot of sense to me. I’d like to light a few virtual candles here for some recently deceased famous and not so famous people.

I light a candle for Nancy Mairs. She’s one of my favorite authors with a disability. When you read her Waist High in the World or any of her other books, you meet a bright, articulate and sensitive woman who thinks and feels deeply about her world and her God. An obituary is at: www.nytimes.com/2016/12/07/books/nancy-mairs-dead-author.html.

I’ll light another candle for another author, Luis Montalvan. For those of you who read Until Tuesday by Luis Montalvan about a veteran and his Golden Retriever PTSD service dog. I’m sorry to let you know, Luis died last weekend. His descriptions of PTSD helped me understand it better than anything I’d read in the psych literature. Apparently Tuesday is living with a loving family in the Northeast. More info at the training school www.ecad1.org/Luis.

I’ll light another candle for another Nancy. I became aware of her from visiting her assisted living facility where she and her hearing ear service dog lived. She died not as a famous person, but as someone who brought out a lot of caring from staff and others at the facility. Since few of us know sign and she had trouble reading lips, communication was somewhat limited. But her pride in her pooch shone through to the point of dressing it up with coats, etc. Staff and residents banded together to walk the dog and take care of its needs when she was hospitalized.

I’ll let a young man from a Sunday school class I talked to recently light the last candle. At the beginning of the lesson, somebody else rushed to light the candle because the young man was on crutches from a fall that week. He protested that he could still do it, but others “helped” him by doing it for him. It was a great lead-in for my talk about how to help others without sliming them. I’m assured that after my talk, he will get his candle-lighting job back next week and will get to ask for whatever help he wants (if any) in order to be able to accomplish his chore.

As Eleanor Roosevelt and others have said, it’s better to light a single candle than curse the darkness. Let’s hear it for candle lighters.

December 3 is the International Day for Persons with Disabilities. As I traveled to Arizona for the National Center for Disability and Journalism awards and moved around my community, I saw many signs of hope that our world is becoming more inclusive and welcoming to the 19% of us who have disabilities.

On the flight to Arizona, I shared the bulkhead seats with a young woman who proudly told me a bit about her emotional support animal who was firmly ensconced in her lap. He was crying a lot on takeoff and landing. I was able to put my 43 years of service dog on planes experience to work and suggested she try giving him a little ice to lick. He loved it and the whining ceased. It may be the placebo effect, but we’ll take it.

In the Q and A following the speech by the winning journalist, Chris Serres, www.ncdj.org a student journalist with an invisible disability asked if she should write about disability issues or not. I was so pleased that she was told that she could and should because her experiences could give her good ideas of questions to ask and people to interview.

On the flight back from the NCDJ event, I was seated next to a truly loquacious woman who had never ever met a blind person and had many observations and questions. They ranged from “how do you read?” to the old standard “Your other senses must be much better than mine” to which I gave the usual “No, I just use them more” reply. But by the end of the LONG flight, she was bumping elbows with me in solidarity about the wonders of love. She was off to go live with Mr. Wonderful and make a new life for herself. I did manage to “nap” for a half hour and escape the torrent of questions before this introvert said anything unkind. Truly I’m glad she felt free to ask so many questions, as she said “How else do I know?” Maybe Blind Person #2 in her world won’t get quite the tsunami of questions.

I worked with a church secretary to get the readings and get familiarized with the church so I could read Scripture at a friend’s dad’s funeral. She also had not encountered a blind person in this situation before, but graciously answered questions and did what I asked like sending the readings electronically ahead of time and describing and walking through the front of the church with me. She was doing a little gentle teasing by the end, so I knew all was well between us.

A friend made me a safety pin with bells after having read my dilemma about the Safety Pin movement and “how would a blind person” know who has safety pins on. As she pointed out, it’s not perfect because the bells aren’t always jingling and it could be confusing if someone had bells on for a fashion statement, but it was a definite gesture of inclusion. So were the many kind strangers efforts to guide me through airports and around an unfamiliar university building.

Lift a glass December 3 to our rich world full of kind and interesting people with and without disabilities. Or for you more serious souls who want to improve your minds, try Jane Brody’s Tuesday Personal Health article in the New York Times about “What Not to Say to a Cancer Patient”.

 

Deep, immobilizing sadness has morphed into sorrowful but determined moving forward for me this week.

So far I’ve celebrated the referendum to add funding to our local schools that passed and a candidate’s being elected in another state who I admire.

I’ve listened as people in marginalized groups have shared their fears about a “climate” change away from tolerance and inclusion toward hate and division. Being part of a panel on aging in different communities www.wpr.org/newsmakers (November 17) reminded me that we’re stronger together when fighting for change.

I’ve read chapters from Sauls’s book: Befriend: Create Belonging in an Age of Judgment, Isolation and Fear about befriending people who voted differently from me and the disabled (had to read what the author said about my group. Bottom line: God is in charge, I’m not). Next I’ll read Uncommon Gratitude: Alleluia for All That Is by Joan Chittister and Archbishop Rowan Williams. On Twitter the tags of #upyourempathy and #safetypin have got good stuff about making peace these days. To add to the caveats about safety pins, how do blind people know you’re wearing one? Maybe it should be a safety pin with a jingling bell on it!

Also this week we lost a great musician whose lyrics often speak to me, Leonard Cohen. “There is a crack in everything, that’s how the light gets in.” —Leonard Cohen. I feel broken by the election; maybe that can be my prayer that somehow the light will get in my soul and our world.

As Thomas Edison said: “What you are will show in what you do.” I’ve signed up for rooftop solar panels. I’ll generate some of my own energy when the sun shines. It’ll also be my symbolic way of saying I’m with those who believe in trying to do something about climate change, discrimination, alleviating poverty and all those other liberal causes. I’ll try extra hard to be kind to those who believe differently than I do—maybe eventually I’ll feel it.

Will you stand or roll with me (whichever works better for you)?

 

President Johnson proclaimed White Cane Day for October 15 in 1964. Originally it was to remind motorists about the laws that protect blind users of white canes or dog guides when crossing the street. Motorists are supposed to stop ten feet away from us even if we’re not crossing between those lines we can’t see! Over the years, I’ve been part of many fine photo ops, gotten numerous public officials to offer proclamations, etc.

Emphasizing safe travel in today’s world of inattentive drivers still makes a lot of sense. In 2011, President Obama also declared it Blind Americans Equality Day. It now emphasizes dignity and equality as well as safe travel.

As someone who grew up hating to use a cane because it made me look different, I like this destigmatizing of the cane approach. So I spent the evening of October 14 this year fortune-telling for the blind and sighted community members gathered at a local park to celebrate.

http://www.weau.com/content/news/Celebration-brings-people-with-vision-impairments-together-397164071.html

http://www.leadertelegram.com/News/Front-Page/2016/10/13/Value-ofwhite-caneexplained.html

Games were played, hot dogs consumed and a short walk with signs in braille and print about famous blind and visually-impaired people was taken. Cane users from age three to at least sixty-three were there along with five guide dog users. Teachers of the visually-impaired, friends, families, volunteers from local Lions clubs and Center for Independent Living for Western Wisconsin were there to help and to learn and celebrate.

I did fortune-telling to show blind adults helping out and having fun at a community event. I was richly rewarded by the kids’ responses to their fortunes. One young gentleman told me I was “terrifyingly accurate”. At the end I did the thank yous, gave Lions members who’d helped print/braille magnets that said “You rock” and briefly pontificated about us all going Forward Together. Kids, parents, siblings and service providers made worthwhile connections I hope. Since the local paper and a television station covered it and mentioned the ten foot stop rule, maybe we’ll be safer traveling for the next 364 days of the year.

Thank goodness we can celebrate Teen Read Week no matter what age we are. For me, part of it is nostalgia and part of it is awe at what’s out there now for teens.

As a teen I loved science fiction by Asimov, Heinlein and Clarke, probably a precursor to my adult love of thrillers and mysteries. I didn’t care about the fantasy parts of the genre, just heroic conquering of planets for the good guys. I also enjoyed some historical fiction like Rosemary Sutcliff’s Lantern Bearers. I was pleased to see Nancy Pearl also recommended it in her Book Crush: for Kids and Teens. Reading Grapes of Wrath in English class hooked me on John Steinbeck. Someday I’ll reread some of his novels, a rarity for me. I just love his characters.

Another English teacher made us read a memoir. I read Keep Your Head up Mr. Putnam! about Peter Putnam’s first guide dog. Reading about a living blind adult was a great change from Louis Braille and Helen Keller bios, all that I’d had before for role models.

How times have changed! This year, Teen Read Week, a national initiative created by the Young Adult Library Services Association (YALSA), a division of the American Library Association (ALA), features a multi-lingual “Read for the fun of it!” theme. The theme highlights the resources and services available to the 22 percent of the nation’s youth who speak a language other than English at home.

A national group of authors and publishers, We Need Diverse Books published the following piece this week: “Perspectives of Authors With Disabilities – We Need Diverse Books” http://weneeddiversebooks.org/perspectives-of-authors-with-disabilities-part-1/.

There are many more memoirs of people with disabilities suitable for reading by teens. Two of my recent favorites are Needles by Andie Dominick about her life with diabetes and Prison Baby by Deborah Jiang Stein about the emotional issues related to her adoption and how they influenced her life. My Beloved World by Sotomayor (who also has diabetes) provides a great read for teens about a full productive life with a disability on board.

To find out what’s new in teen books, beyond the best sellers, try looking for Alex, Printz, Schneider Family and other book award winners. For those of you who think you’re beyond teen reads, remember Harry Potter was penned for teens, not adults.

While snooping around for trends in teen reads, I discovered a mystery by Linda Greenlaw, Fisherman’s Bend, a fishing boat captain whose writing I love. I’m off to start reading it and hopefully to lose myself in the joy of reading. That’s the point of Teen Read Week, no matter what age one is.

Banned Books Week always reminds me of the privilege of reading freely that I treasure. Whether books are banned or not available in accessible format, they’re unavailable. The growth in my lifetime of books available to me to read has been phenomenal. So I’ve celebrated this week and every week by reading widely and voraciously. On this week’s list:

  • Several chapters from Altruism by Matthieu Ricard for a study group at church
  • The Peach Keeper by Sarah Allen—a family saga with a bit of romance and some mystery—for a book club
  • A couple thrillers—too junky to admit publicly
  • The Outsiders by S.E. Hinton—a young adult story of friendship and belonging that I didn’t get to read when young
  • Stone Fox by John Gardiner—dog story for kids of all ages
  • Out of My Mind by Sharon Draper—young adult novel with a protagonist with a disability and plenty of grit
  • The House on Mango Street by S.Cisneros—a Latina girl’s growing up in tough circumstances novel—required in some schools but good reading whatever age you are
  • All Things Strange and Wonderful by Dr. Reb—veterinarian’s saga of time in Peace Corps in Malawi

Clearly I lean toward animal stories and tales of people overcoming obstacles, with a dash of thrillers to keep my heart pounding. Nowadays if all my other sources of books in alternate format fail me, I can scan the book like I did with the veterinarian’s story.

Here’s to no banned and no unavailable books!

I’d planned to go to an audio described play at the Guthrie. But when I read about it online, I became concerned that the husband beating up the wife in the play might trigger bad reactions from my guide dog and/or me. So I bailed out and got some audio described movies instead.

When I was in college, I remember going to a James Bond movie with a date and falling asleep. I knew there were car chases, shots, love scenes and more car chases, but who was doing what to whom was a total mystery to me. I didn’t want to “bother” my date so didn’t ask who just got shot. One of the movies I borrowed was “Spectre”, a newer Bond movie that has audio description. I loved watching it and stayed on the edge of my chair for most of it. The describer did a masterful job of quickly identifying the characters and describing the action and relevant scene changes on the fly. I don’t think the credits mentioned who described the movie, but there ought to be an academy award for audio description and I’d nominate him. I also subscribed to NetFlix because they have some described shows that interest me and I feel like I should support those who try.

If you want to learn more about The Audio Description Project, a good place to start is www.acb.org/adp/. This website is an initiative of the American Council of the Blind and is a comprehensive site detailing what audio description is, who does it, how to get it, and much more. It contains a list of DVDs and television series with audio description as well as schedules for watching television shows with audio description and lists opportunities for individuals to train to become audio describers.

The other area of culture I featured this summer was gastronomic culture. The local farmers’ market got plenty of business from me and my friends’ gardens were bountiful. My tomatoes produced but got some dread disease so the season was short. My favorite new recipe from the web was for zucchini bites. After I tinkered with it, in case you’d like to make Kathie’s zucchini bites, here it is:

  1. Grate three cups of zucchini (two big ones) and squeeze as much water out of it as you can.
  2. Combine with one egg, one cup of Cheddar cheese and one cup of seasoned bread crumbs or stuffing mix.
  3. Mix well.
  4. Form into walnut-sized balls and bake on a greased cookie sheet at 350 for about a half hour or until they’re firm on top.

Viva culture!

 

A recent study of elders found that those who read books lived two years longer on average than those who didn’t, even when income and other relevant variables were taken in to account. This is good news for us book lovers! When I heard that August 9 is National Book Lovers Day, I decided to see how folks were celebrating. I queried friends, listserv members and Facebook and Twitter pals and they came up with the following great ideas: recommend books to friends, dust bookshelves, order a book from Amazon and send it to a friend, take their daughter to the library and get an audiobook they could both enjoy, work on writing a book, and read my children’s book with their grandchild (I didn’t pay them to say this)!

I finished reading Harry Potter and the Cursed Child and trolled various libraries for my next good read. Technically, Harry Potter and the Cursed Child is a play script, not a book, and that’s where access issues raised their ugly heads.

I contacted my favorite purveyors of accessible books, the National Library Service for the Blind and Bookshare months ahead to find out when they thought they’d have Cursed Child. Both said they were looking into it. When no grand announcements occurred, I asked again a week ahead of the play’s opening. It turns out that the amendment to copyright law allowing production in alternate formats for blind and print handicapped people does not apply to play scripts. Then there’s the problem of how to record a play with just one narrator. Being truly desperate to keep up with the other fans, I found the script would be available as a Kindle book which I can read using a Kindle app on my computer or phone. With quick action on my local library’s part, Overdrive bought it and I checked it out within twenty-four hours of its availability to regular print readers. This is probably way more info than you bargained for, dear readers, but I give it to you to show how access happens, extra work, and extra help from others get the job done, sometimes anyway!

Was the extra work worth it? Yes and no. Imagining the next generation was fascinating. Reconnecting with favorite characters was satisfying. The themes of how past choices influence current realities and parent-child relationships being differently perceived depending on whether you’re the parent or the child were believably dealt with. Script directions were distracting to me and made me wish I was viewing the play or hopefully will be viewing a movie with all sorts of special effects in a year or so. Just like with a really good book, I was left satisfied but also wanting more.

Enjoy good reading!

After last year’s major push to get the 25th anniversary of the Americans with Disabilities Act celebrated locally by exhibits at libraries and a film showing, I decided this year to celebrate more privately by doing extra advocacy work and being mindful of all the access issues raised for me in a day of being an integral part of my community.

I started the day checking Facebook. Mainly inaccessible posts of pictures or pictures of words which Voiceover can’t read. But there were a few verbal updates and one quiz that was fun and accessible about what flower you’d be.  In case you’re wondering, I’m lavender. “Lavender: you have a soothing presence, people love your company and you always know how to make them feel better. You are thoughtful and considerate, often putting others first. You can make strangers feel at home. No matter how sad someone is feeling, you can always provide comfort and solace.” It was on Facebook, so it must be right, right?

Then I played a few rounds of trivia crack (mostly accessible these days), grabbed my first cup of coffee and settled in to check e-mail on my desktop computer. Windows 10 is working well for me, although I did have to pay $140 to upgrade my scanner to work with it.  “Free” Windows 10 wasn’t free in my book and I’m not sure it’s wonderful, but thanks to many people pushing Microsoft it is mostly accessible.

Next I talked to an intern from a law firm that is considering a class action kind of suit against a large company which has routinely ignored pleas for accessibility. If I told you who it was, I’d probably have to kill you, so don’t ask.  They became more interested in my stories when I was able to send them emails dating back five years pleading for access and offering to help with it.

I worked on arranging captioning and interpreting for the Schneider Disability Issues Forum in October at the university. I get to do 90% of the work for this event, but the university does provide clerical support and a couple of friends help pay for the speaker, captioner and interpreter.  I fear if I ever quit arranging it, it would cease to exist. In these lean times for universities in Wisconsin, nobody has time or energy to take on another worthwhile project.

I worked by email revising an article urging blind people to vote and describing accessible voting technology. The editor wanted me to clarify the sentence he’d highlighted. I’m not sophisticated enough to find highlighting using my screen reader (although I think it is possible). So he made a reasonable accommodation and pasted the offending sentence into an email for me to rewrite.

For lunch I microwaved a burrito (guessing at the time because instructions were not accessible). I punched in the time on my microwave which I’ve put bump dots on the 5, the 0, the start and stop keys. Flat screen technology has to be modified or equipped with voiceover to be accessible.  Bump dots (available at most hardware stores) are a cheap modification.

After lunch and a little nap I worked with a friend on a talk we’ll give in January about self-publishing. The accessibility pieces of it were my adding a sentence to the advertising about “If you have disability access needs, contact …” and my suggestion that we hold the talk in the community room of an assisted living facility.  I like breaking down barriers and retired folks may have the time and energy to write, so why not have the program there?

Then it was off to a book club for a great discussion of Traveling with Pomegranates by Sue Monk Kidd and her daughter Ann Kidd.  We were also deciding on reads for the rest of the year.  One gal really wanted us to read a book by a friend of hers which was not available in accessible format. I will contact the author and ask if they’ll give me an electronic copy (like their last draft of the manuscript). Some authors will do this and some won’t.

The 26th anniversary of the ADA closed for me with another round of Facebook, Twitter, Trivia Crack and starting a thriller from the public library on CDs.  On the news I noticed that several references were made to disability issues by various speakers at the Democratic National Convention.  After 25 years, disability issues are out of the closet; maybe after another 25 years they’ll be mainstream issues. It was an ordinary day, doing projects and having fun but little of it would be possible without disability accommodations. Happy birthday ADA; live long and prosper!