Archives for posts with tag: blindness

As Lainey Feingold pointed out in her post “Today is the 6th annual Global Accessibility Awareness Day (GAAD). It’s a day to recognize that everyone uses technology — including those of us who can’t see a screen, hear a video, or hold a mouse. Accessibility means we can ALL participate fully in the digital world no matter how we use our computers, our iPhones, and the other technologies we all increasingly rely on. GAAD is a day to honor the tens of thousands of people across the globe working to make technology available to everyone.”

I celebrated early this week by Facetiming with three groups of students from the Florida School for the Blind. They were attentive, involved and asked good questions. One of my favorites was a ten year-old who asked: “Before electronics was there anything you could do for fun?” I reassured him there indeed was; reading books, listening to birds, playing cards and Scrabble, etc. But I also agreed there were lots more fun time wasters now with iPhones, etc. I just happened to mention Trivia Crack and there was a roar of approval from these tech savvy blind kids.

Later in the week when I was awakened at 1:00 AM by an owl making a racket for about twenty minutes I used the bird identification app on my iPhone to figure out it was probably a Barred Owl. I don’t know what it was so excited about, but at least I know who was excited.

On the actual day I’ll read and respond to a hundred emails, scroll through several hundred Facebook posts, skim eight newspapers, and check my Twitter feed a couple times. Then I’ll lie in bed and download the next book for one of my book clubs March by Geraldine Brooks and dive into it—all thanks to tech access.

Celebrate with me by Facebooking a picture that you describe or send a nasty-gram to a website that makes you do a CAPTCHA!

My day started with a group phone call about Medicaid changes and how to engage our Federal representatives and the press. Ten advocates from the Eau Claire area gathered on the phone. All are worried that Trump’s changes to the Affordable Care Act will mean less money for each state and ultimately less services for individuals with disabilities. Many are worried that their loved one will end up warehoused in a nursing home because it’s cheaper than daily care in the community.

The day ended with a gathering at a local brew pub. The folks gathered turned it into another birthday party for me. The contingent included a parent and an adult child who has significant cognitive disabilities. Everybody at the table included this young man, teasing him about stealing his French fries, acknowledging his wish that the party include music (which it didn’t), etc. Funny stories were shared including describing a squirrel’s picking up a piece of pizza near the university and trying to carry it across a street for later consumption. Two dogs on leash came up to talk to my guide dog, providing some good butt-sniffing community for her.

All in all, the community that the phone call in the morning was strategizing about how to save was enjoyed. Beer and good people, Wisconsin at its best.

My birth month is upon me and I’m looking back over sixty-eight years. Life experiences and reading leave me focusing on the journey from loneliness to community.

Dorothy Day’s autobiography The Long Loneliness and an excellent biography of Rosemary Kennedy bring to mind many experiences of being “other”. This week I found myself trying to express feeling second class to a group I’m part of that is putting on a gathering for blind kids without listening to input from blind adults. I tried to be gentle and positive about the fact they are doing something, but time will tell if they hear both the praise and the request to do it differently.

My book club by phone from the state library for the blind discussed Rosemary the Hidden Kennedy Daughter by Kate Clifford Larson. Although Rosemary’s disabilities were cognitive rather than visual, several of us who grew up blind identified with her desperate but often unsuccessful attempts to fit in in her family and world. For a small example, at the recent County Democratic dinner, I won a picture book. As a sixty-eight year-old, I can smile and think “Who will I pass this book on to?” when I won a totally pictorial book about recent women’s movement demonstrations I still felt a tinge of I wish I’d won the lime-scented goat’s milk soap, but the book is mine to do good with. And I do know the perfect single mom, low-wage earner who is involved in government in her non-existent free time who will find community looking at the book.

When I went to vote, using the “handicapped” voting machine, three members of the community fiddled with it until they got it working. Then as they stood around waiting for me to finish, one of them loudly kept asking their colleagues “Now what if a normal person wants to use the machine?” By the third time she used the word “normal” to mean sighted, I’d had enough. I blurted out: “don’t worry, there aren’t any normal people in this ward.” Her colleagues laughed and she said: “Oh, you could hear me.” I remained silent, finished voting and gleefully told the friend I’d ridden to voting with as soon as we got out the door. I had a community to share that story with.

I am blessed with community in people who celebrate my birthday with me at restaurants of my choosing and give gifts of time to take me to the vet for Luna’s spring tune-up and to a flute concert I sponsored at a nursing home where some friends now live.

When my brother asked what I wanted for my birthday, I asked for a box of goodies from the grocery store where my nephew just started working. I asked for new things I wouldn’t necessarily know about in the areas of snacks, tea and coffee and ethnic meal kits. I can hardly wait to see what arrives!

 

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.

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.

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!

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.

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.