Socrates said, “Wisdom begins in wonder.”

Having concentrated most of my life on getting educated, working, volunteering, etc. it’s a treat in retirement to be able to explore the arts a bit. As a blind person, I think wonder and beauty have taken back seats to being productive, at least in my world. But as Elaine Scarry points out in On Beauty and Being Just “with its direct appeal to the senses, beauty stops us, transfixes us, fills us with a “surfeit of aliveness. In so doing, it takes the individual away from the center of his or her self-preoccupation and thus prompts a distribution of attention outward toward others and, ultimately, toward ethical fairness.” So these side trips to a poetry reading and an art exhibit may not be side trips at all but fuel for the journey.

A friend of mine went to a weekend poetry-writing workshop put on by the Chippewa Valley Writers Guild. Only ten poets were admitted and they got personal critiques from a poet who teaches at the university as well as hearing craft talks by a publisher and a poet laureate. At the end of the workshop they had a reading. I was part of a carload of five friends who went to listen. Poets ranged from an angry young man in his ‘20’s to my friend who is 75-plus. Afterwards I got to tell a couple of the poets how brave I thought they were to gift the world with their poetry and they glowed. Poetry read aloud by the writer is a treat, far superior to my screen reader (“robo-read” as some of my friends call it).

A national organization, Art Beyond Sight (www.artbeyondsight.org) sponsored a workshop at the Woodson Art Museum in Wausau (www.lywam.org/sandhill-crane-sapling-sculpture/). I organized a road trip with a couple of friends.

Did you know that Van Gogh had glaucoma? Did you know that 42 percent of all seniors experience disability? This market segment holds $220 billion in discretionary spending power (according to the US 2000 Census). Museums and other cultural institutions cannot afford to lose, or exclude by omission, this large a group from their audience, staffing or funding base. People with disabilities should be a significant part of their marketing. Art Beyond Sight gives museums tools and training to make their collections and exhibits more friendly to people who are blind or have other disabilities.

On a Saturday morning, two guide dogs, six blind people and a dozen sighted folks sat around picnic tables in Woodson’s sculpture garden. Guest artists Donna Dodson and Andy Morelein, known as the Myth Makers, conducted a ninety minute workshop where we learned about the materials and production of their piece in the sculpture garden of the Woodson.

The collaboration between Moerlein and Dodson is born from a mutual love of the wild. Moerlein takes inspiration from events in the natural world, which leave visual marks that strike a narrative chord in the artist. Dodson takes inspiration from the mysterious nature of animals that spark her imagination. Although monumental in scale, these ephemeral works are temporary in nature. Made from natural materials, they are site specific, and respond to their local audience. Meaning to only last 3‐5 years, they appear, fade, and disappear, adding a chapter to the life stories in their communities. The Wausau sculpture is of two cranes and is twenty feet tall, made of saplings and plastic grocery sacks. At the end of the workshop we got to try making a sculpture from twigs and pipe cleaners. My take away was: it’s harder than you think to take an idea and express it artistically. I will not post a picture of my sculpture of a crow sitting on a rail fence! Suffice it to say the rail fence was the easy part.

I’d love to learn more about sculpture appreciation. Every year Eau Claire brings a couple dozen sculptures to town and at the end of the year at least one is bought and displayed permanently. Next stop a tour of some of this year’s offerings and a trip to an audio-described live theater production in Minneapolis in August.

This week I get to speak to the luncheon celebrating this year’s winners of the American Library Association’s Schneider Family Book Awards for children’s books with disability content. This is the thirteenth year so I’ll reflect on thirteen signs of progress towards full inclusion in media I’ve noticed this year.

The first four signs are the books themselves:

  • Fish in a Tree by L. Hunt
  • Emmanuel’s Dream by L. Thompson
  • The War that Saved My Life by K. Bradley
  • The Unlikely Hero of Room 13B by T. Toten

The children and teens in these three novels and one biography all show grit. They have the passion and persistence to deal with both their disabilities and people’s disabling attitudes. Much in each of them for young readers both with and without disabilities to emulate.

This year there were 135 books submitted for the librarian judges to choose among.  When the awards started, there were a third that number. Since my goal in setting up the awards was more good realistic books about disability experiences, this makes me very happy.

Teachers, parents and librarians are key to children getting good books in their hands. I skimmed three textbooks on teaching children’s literature published since 2011 and each of them had a brief mention of disability-related books and how to pick the wheat from the chaff.

About ten years after I started these awards, the We Need Diverse books grassroots coalition got started. They do include disability in their efforts towards diversity.

There’s a wikipedia article about the Schneider Family Book awards. For those of us who consider Wikipedia a trusted source on the Internet, it’s good that it’s out there. Parents seeing a SFBA award sticker on a book might research it and be led to other winning books.

There’s an emphasis on intersectionality these days in dealing with diversity.  Somebody is not just a Disabled Person. We all have multiple identities, gender, sexual orientation, race, etc. The winning books show these multiple identities in their characters.

If there was a Bechdel test for disability-themed books, these would pass it. The Bechdel test for women in film is that there are at least two prominent female characters and they talk to each other about something other than men in the film. Books with only one disabled character would not pass.

There’s now a Disability in Kid Lit website with reviews by people with the disability the book is about. “Nothing about us without us” as the slogan in the disability rights movement says. If you’re wondering if it really matters whether a reviewer has the disability, consider the difference in reviews of the movie “Me Before You” depending on whether the reviewer had a disability or not!

The good news for kids with reading disabilities and visual impairments was that all of the books were available on Bookshare when they won the awards and three out of four were available from the National Library Service for the Blind and Physically Handicapped. The fourth book was subsequently made available by NLS. My local public library also had three out of four available in alternate format.  If you can’t read the book, it doesn’t help much even if it’s a good one!

Out in the world, there is beginning to be better journalism about disability issues.  One day I read headlines about “Blind Birder Recognizes Three Thousand Calls” and “Dyslexia Motivated Tommy Hilfiger to Try his Skills at the Fashion Business”. Both articles highlighted accomplishments but without the sickly sweet verbiage of inspiration porn still present in much journalism.

Realistic journalism and portrayals in children’s and young adult books move us toward less stigma and more inclusion for people with disabilities. Thanks to the American Library Association for the care and attention it gives to the Schneider Family Book awards every year, and to the teachers, librarians and parents who will share these good books with children and teens.

Freud said if you love and work, you have a full life. I’d add play and pray. Here are some signs of hope this week that people with disabilities are mainstreaming into regular life more, particular in the area of play:

  • Deaf man wins Dancing with the Stars contest and uses his prominence to educate people about issues faced by Deaf people. Nyle DiMarco wanted to teach Deaf kids math. Through DWTS he says, he can “educate the world and & invest in Deaf children”.
  • One of the contestants in the national spelling bee, who finished in the top ten of the contest, was a child born deaf who has cochlear implants.
  • A Ukrainian, Wheelchair-using fashion model, Alexandra Kutas is making waves for inclusive fashion shows.
  • People with disabilities are protesting at showings of the movie “Me Before You”. The glorifying of a quadriplegic’s suicide and the fact that there was no disability input in the script, in the choice of the actor playing the part of a quadriplegic, etc. deserve to be publicly commented on.
  • More Kindle players are becoming more accessible to people who are blind. New features being introduced into Amazon’s Kindle readers and Fire tablets will now make these devices readily accessible to the visually impaired. Side note: Check before buying to be sure the device you’re lusting after will work for you!
  • People with disabilities are holding candidates accountable for taking stands on disability issues and advocating for accessibility of polling places under the banner “Crip the Vote”.
  • Lured by a free month and American Council for the Blind’s (ACB) work with Netflix, to become more accessible, I signed up. I know the accessibility is in its infancy, but I was amazed both positively and negatively. The website is inaccessible. Onscreen visually are names of movies but screen readers can’t read them. ACB has a list of audio-described shows and movies so you find one of those you want to watch and then search it out using the search box on the Netflix page. Supposedly you can watch on computer or on iPhone, but I couldn’t get the computer to play it. But on the iPhone it worked fine and “Antz” came through complete with description. Five minutes was enough to convince me I didn’t want to watch it, but I could if I wanted to. I’ll go through the list of what’s available this weekend and see if I can get all I want watched in a month. I’ve never been a huge fan of television programs except for M.A.S.H., so I may not have to watch much to get full value out of my free month.
  • In the Midwest, rhubarb is a rite of spring. A friend who lives in an assisted living facility because of various disabilities was lamenting the fact that they wouldn’t have their usual rhubarb crumble this year because the gal whose son provided the rhubarb died. One can purchase rhubarb, but the facility’s management apparently wasn’t going to. Around here purchasing rhubarb would be like purchasing air. So I asked friends and friends of friends to share their rhubarb and a friend to truck it out there to the facility. From the first delivery rhubarb bread pudding and rhubarb crumble were enjoyed. In a couple days, another ten pound shipment will go out.

Small victories!

 

In New York, there’s a “Humans of New York” project. A writer and photographer Brandon Stanton has published two books now profiling and picturing “ordinary New Yorkers in the most extraordinary of moments”.

In Eau Claire this year, sixth graders at a local middle school did a project interviewing community members and writing summaries of what they learned from that person. Three university students took photos of each human. The remarkable humans ranged from a nurse to a soldier; from a jump roper to a turkey caller; from a CSA farmer to a yoga instructor; from a couple who got a wheelchair made for their Lab who was paralyzed so he could keep moving to a couple who run a shelter for senior dogs. A young man who is Deaf and is in school to become an architect or engineer, someone with Asperger’s and I represented people with disabilities active in the world.

Remarkable Humans picThe coaching and teaching that helped these sixth graders research their human, dream up good interview questions and do the write-ups was amazing to me. Several of the students read part of the welcome speech at the celebration event. I got to meet one set of parents of one of my interviewers and hear from them how appreciative they were of the great education their child was getting in our public schools. I’ll go to sleep smiling tonight thinking that someday this city and this world will be run by kids like these. Remarkable humans are all around us.

Sometimes a “news” story just jumps out and grabs me. For example, Monday’s Huffington Post had an article on Mercury being in retrograde four times in 2016. It explained that Mercury is in charge of communications, so when it’s in retrograde, don’t sign anything, don’t take on new projects, etc.

I’m no big fan of running my life by the planets and stars, but had been thinking about the next phase in my Occupying Aging journey as I prepared for a talk to a church group. I skimmed over ninety books written about aging since I published Occupying Aging to see if anything new had been invented on the subject—not much has! I found four memoirs that are now on top of my must-read list:

  • Fly While You Still Have Wings by Rupp
  • Growing, Older by Gussow
  • Solace by Sojourner
  • Old Age: a Beginner’s Guide by Kinsley

I’m feeling like I’ve achieved maximum benefit possible in some of my volunteer activities and it’s time to back away.  “But what’s next?”  my busy as a beaver self asks.  Perhaps some recharging by reading, but also by listening, laughing and taking a Sabbath from some of the busyness.

Since it’s spring in the Midwest, one of the sound sources I’m listening to these days is the birds. As Emily Dickinson wrote: “Some keep the Sabbath going to Church — I keep it, staying at Home — With a Bobolink for a Chorister — And an Orchard, for a Dome.” Good classical music on public radio renews my soul. Listening to people describe the character of a colleague who died recently reminds me of the power of attentive listening in relationships.

As to humor, life is good at presenting me with that. As I was selling one of my books to a gal after a luncheon where I spoke, Luna stuck her snout into her open purse and almost had the slice of bread the gal was taking home. She didn’t quite get it, but the gal didn’t want it after Luna had breathed on it, so the trash won.

Occasionally those funny e-mails that circulate rise to the guffaw level. A recent one from Richard Johnson’s adult life-long ministry listserv about God’s plan for aging qualifies. In his nine important lessons to remember for aging, number 1 was “Life is like a jar of jalapeno peppers. What you do today may be a burning issue tomorrow.”

Sabbath by Dan Allender with its emphasis on spending time reveling in God and his creation will jumpstart me on this next phase of my Occupying Aging journey, I hope.

Stay tuned and don’t be a stranger, okay?

Want to go beyond “nice” to be an awesome ally for people with disabilities?  Consider some of the following moves:

  1. Dig deep; don’t take news reports of cures for disabilities or technological fixes for disability issues at face value. Sometimes a press release about a cure being just around the corner means the researchers need more money. Recently Facebook trumpeted that they would label pictures with captions describing them. Labels say things like: “may be a person”, “may be outside”.  That’s mildly interesting but it might be good to know if it was the Mona Lisa or Adolf Hitler!  Ask people with disabilities what they think of the new cure or technological fix before getting too excited.
  2. Listen to what words you use to describe people with disabilities. You may be a caregiver for a person who has Alzheimer’s, but you are not a caretaker. They are not property! Comments I hear like a recent one from a good liberal exhorting people to do something “unless you’re in a wheelchair and can’t do anything” are not meant but are said.  Our language is full of slights like “I’m so blind!”, “That’s really lame” etc.  The only way I know to change the stupid things I say is to listen for them.  Maybe some kind soul will tell me, but living in the Midwest they may be too polite to do so.
  3. By all means offer help to anyone whether or not they have a disability, if it seems like they need it. Then listen carefully to their response and act accordingly. “Are you okay?” is not an offer; “May I help?” is.
  4. Offer to do things with us not for us. The company is appreciated as much as the help.
  5. Get to know us individually. The initial encounter may well be awkward—push on through. If you just know someone with a disability well enough to call them “inspirational”, you don’t really know them. Just like you, they may be awesome, inspirational or just plain dull at any given moment.

One out of five people, or one half of people over sixty-five has a disability. Do your friends reflect those statistics?

  1. Work to be accessible yourself. Write a few words describing the picture you tweet or Facebook. Arrange your next party in a wheelchair accessible venue. Get in the habit of thinking “if I had a friend who was blind, deaf, or used a wheelchair how would I accommodate them?”  Those aren’t the only disabilities in the world, but they’ll start your thinking.  The more you think about that question, the more likely you are to make a friend with a disability.

Our radar tells us when we’re near potential awesome allies. :) (Grinning face icon!.

What’s your favorite season of the year? According to repeated Gallup polls, spring rates highest with 36% favoring it. Summer and fall are almost tied and winter brings up the rear.  Even before I checked the polls to know what to think, I’d decided I favor spring. Even with losing an hour of sleep when we spring forward and the nuisance of spring allergies, it’s still a winner in my book.

Some of the best parts of spring (in the northern Midwest) include:

  • Honking of ducks and geese heading north
  • Birds singing heartily to establish territories and garner interest from the opposite sex
  • April being poetry month means one can even find poetry in some newspapers
  • My birthday is in spring so I can stretch it out for a month of celebrating
  • Most bugs are not out so one can sit outside without getting chewed up
  • Vidalia onions, artichokes, asparagus and strawberries and rhubarb, are available at reasonable prices
  • Spring flowers make walks a treat for the nose, especially the lilacs

If it takes books to convince you to love spring, let me suggest Chasing Spring: An American Journey Through a Changing Season by Bruce Stutz and Spring by Steven Schnur (acrostic poems about the season).

Enjoy the births and rebirths of spring.

I was emailing with another blogger about what picture to use to represent a blog we were writing together. Somehow she (who is partially sighted) challenged me to come up with a picture that could represent a nonvisual example of perspective.  I suggested “a picture of someone in Wisconsin wearing shorts and someone in Florida wearing a winter coat with a sign saying “Fifty degrees F; it’s a matter of perspective.” I began to notice situations where a blind person’s perspective on a situation was radically different from a sighted person’s perspective. Examples follow.

This week, with a good bit of fanfare, Facebook announced that they were automatically captioning pictures that people post, so they’d be accessible to those of us who are blind. I eagerly checked my Facebook feed, which I’d swear is about 70% pictures. The automatic captions were like the following: “May be a picture of a person indoors”. “May be a picture of outdoors”. Now that is amazing, I agree that a computer can recognize pictures of objects and decide if it’s inside or outside, but it’s not a real game changer for me. I will still bug my friends to caption their own Facebook offerings with “beautiful sunset on Lake Superior” rather than their usual “Wow, look at this.” It’s all a matter of perspective, Facebook is quite pleased with themselves; I’d give them one star out of four.

Second example of perspective: Freading got back to me about their app not working with voiceover. They said thanks for the idea and we consider your case closed.  They’d heard my idea, probably passed it on to somebody in charge of keeping a list of good ideas and considered it settled. I want to read a Freading book and can’t using voiceover on my phone. For me, it won’t be done until I can read that book.  So I contacted the library access person who will contact Freading and see if as a purchaser of the software, the library gets further in requesting access. Another one star out of four from my perspective.

Frequent discussions in the disability communities where I hang out electronically involve what to do about able-bodied people calling us “inspirational” for all the wrong reasons: like how well someone uses a power wheelchair, instead of how qualified they’d be for the job they’re interviewing for. Disabled community reaction of irritation-rage; able-bodied community reaction of awe at the little things and hurt if irritation is expressed. This week I had this experience when I read a prayer out loud from a braille copy of a book and someone asked me to do it again next meeting because it was “so powerful” that I could read.  My irritation was aroused but I knew her well enough to know she meant no harm. Since I’d asked her to read several times, I just said “I guess it’s fair for you to ask me to read.”

Note to self after all these ruminations about perspective: next time someone pisses me off, perhaps I should put a lock on my mouth until I put myself in their shoes for at least ten seconds. Could be a lifesaver as the political season drones on!

 

 

What makes a perfect birthday for you? I think it depends partly on one’s age. Recently I hit one in the mid ‘60’s, not a milestone, just a day—but it turned out perfect. Perfect for me means lasts a long time and includes friends, fun and fecundity/productivity. (Hard to find that last “F” that meant what I wanted to say!

Tidbits of advice that jumped out at me from emails, Twitter and Facebook that day:

  • Challenges are what make life interesting. Overcoming them is what makes life meaningful.
  • Stay true to yourself and don’t be invisible after sixty!
  • Everyone dies, but not everyone really lives!
  • Being holy means being whole.
  • Two things define you: Your patience when you have nothing, and your attitude when you have everything.
  • “Only one page is left in the book of my life. His name fills that page, His everlasting kingdom.”—Rumi
  • “I encourage you to bear witness to Christ in your personal life and families: a witness of gratuitousness, solidarity, spirit of service.”—Pope Francis
  • “I wish faith wrapped you in a bubble, but it doesn’t, not for long.”—Anne Lamott
  • Recognize the good in your life.
  • Live every day as if it’s your last, embracing each experience as if it’s your first.

And a great question: “What is on your happiness list?”

The birthday started a couple weeks early with a lunch with a friend who was going on an extended vacation.  The actual day started at 3:15am when my trusty guide dog announced she needed to go out.  It was so still out at that time it was almost beautiful and it wasn’t precipitating.  Luckily we could both sleep in a bit. Work for the day included advocating for Freading to be made usable with Voiceover. The company had blown me off with “thanks for your idea”, so I got the library’s accessibility officer to contact them. I wonder if he’ll be blown off as quickly since it’s libraries that purchase Freading so their customers can download electronic books on demand.  Then I did some work on an upcoming talk for student members of the Society for Human Resource Management.  Many of them have heard my basic talk in a business diversity class, so I’ll call it Disability 2.0 and hit some of the same core points but do it differently.  Basic points:

  • Go out of your comfort zone.
  • Treat those of us with disabilities as equal to you but not the same.
  • Ask “how can I help?”
  • Enjoy figuring out what needs to be different like solving a puzzle, not like a chore.

Then lunch with a friend, a nap, two hours of reading (to get bills tended to, birthday cards read and inaccessible chores on the computer completed). I emailed the inaccessible sites about what they need to do to become more accessible (basically get rid of CAPTCHAS).  The day wrapped up with supper with friends and settling down to finish The Martian. I even got to start a book for next Tuesday’s book club: The 100-Year-Old Man Who Climbed out the Window and Disappeared by Jonas Jonasson. Maybe it’ll inspire me to strive to be 100!

The birthday month will rock along with a few more meals with friends already on the schedule and other unknown blessings. Savor the joy when your birth day/month comes along!

As I was growing up, I frequently was told “Don’t act blind.” That meant don’t reach out to feel things and don’t exhibit blindisms like rocking back and forth or putting fingers in your eyes. People avoid using walking canes, hearing aids, etc. because they’ll look like they have a disability. The book How Not to Act Old, although partially tongue in cheek, also gives much advice. Topics include what to talk about, what to not talk about, including your chronic health concerns, what to wear and what kind of pet to have. All this avoiding of looking disabled or old assumes it’s bad to be old and disabled. I disagree!

George Schofield wrote about the same issue in a recent Next Avenue article:

“I already wear hearing aids to help with mild loss. Now I have fallen. If more age-related issues start stacking up, will people stop taking me seriously or question my competence?”

A blogger from www.assistiveware.com offered this guideline among others for Autism Acceptance Month (not Awareness Month):

“We want to live well, not become normal. Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals. Include increasing eye contact and reducing unusual movements.

These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living.

There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space.”.

Another way to view these outward signs of disability and/or aging is as points where we can take the hero’s journey and face our greatest fear. So I appear old, blind, mobility-impaired, so what!

In Disrupt Aging: A Bold New Path To Living Your Best Life At Every Age, Jo Ann Jenkins talks about making realistic choices as aging happens and figuring out how to do what’s important instead of succumbing to the “I’m too old for that” agist attitude so prevalent in our society.

It’s about owning the disability and actively working to meet one’s needs, not hiding or denying it. It reminds me of the Japanese art form kintsugi where gold dust mixed with lacquer is put in the cracks of a broken object. As a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise.

Poet E. E. Cummings said: “To be nobody-but-yourself — in a world which is doing its best, night and day, to make you everybody else — means to fight the hardest battle which any human being can fight; and never stop fighting.” Or, as Dr. Seuss said: “Be yourself because those who mind don’t matter and those who matter don’t mind.”

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