Archives for posts with tag: blindness

As often happens, life clobbers me several times in a short period with something I’m supposed to do or think about. This week it’s how we’re all (including me) multi-dimensional.

For one of my book clubs we’re reading Settle for More by Megyn Kelly. Her memoir chronicles her evolution from a hard charging lawyer to a hard charging journalist and then to a multi-dimensional media personality, wife and mother. She glories in all of these roles and believes women don’t have to settle for less than being a success in career, relationship and parenthood arenas, or whatever arenas they want to be in.

At another book club we were discussing a novel An Available Man by Wolitzer with lots of intimate relationships mentioned. The gals in that group did a lot of personal sharing. I didn’t and when one gal wanted to know who had been married before she pointedly did not ask me. She assumed, I guess, that since I was blind, that dimension of life wasn’t open to me. I didn’t correct her partly out of anger and partly out of not feeling comfortable sharing as much as some were. The group knows me as a successful retired professional and disability activist, but not a divorced person.

Lately I’ve read several blog posts by people with disabilities showing vulnerability. One wrote about what if your guide dog looks to you for visual feedback about his/her performance and you don’t see the checking in? Another discussion on Facebook concerned the next version of the iPhone, X, which has a face recognition unlocking feature. What will blind people with artificial eyes do? A blogger wrote about her situation as a person who has multiple sclerosis and needs a good bit of personal care, “should” she become a parent even though she would need more help? Single dimensional Disabled Person who overcomes All Obstacles is giving way to multi-dimensional person with strengths but also doubts and vulnerabilities.

I’m on the cusp of deciding to go talk to my priest about our church’s need, in my opinion, to become more welcoming of people with disabilities. But this will show my vulnerability way more than I have when I read Scripture, serve on Parish Council and help with various ministries.

The first nudge to go talk came from a non-violence workshop that stressed go talk with someone you disagree with and ask them to tell you where they’re coming from before confronting them with your truth. The second nudge came a couple days later from an Occupy Democrats Facebook post of a Christian song, “No Longer a Slave to Fear, I Am a Child of God.”

Do I show the vulnerable, want to be welcomed part of me? Stay tuned and feel free to ask yourself the same question. It’s not all about me!

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I’m sixty-eight, totally blind and retired, so I thought I’d sneak through life without ever having to do a PowerPoint presentation. But I’ll be doing a talk on Wisconsin Public Television and everybody else does theirs with a PowerPoint, so I reluctantly decided I’d do one. I had no trouble preparing the text for the slides, but I wanted it to “pop” as a sighted friend described it. Luckily this friend volunteered to do so for free, although some chocolate did change hands.

Next I had to figure out how to show the PowerPoint. I didn’t want to be trying to use someone else’s technology (which might or might not be accessible to me) to show it. I decided to number slides and ask an audience member to use the slide clicker for me. I’d ring a bell and state the number of the slide I wanted. The method worked perfectly and didn’t seem to distract the audience. The presentation is on Being Access Able, so it made a great example of asking for help and people being willing to make accommodations.

Getting ready for a White Cane Day celebration we’re having in Eau Claire gave me the justification I’d been looking for to buy a beeping ball. I needed it for outdoor games, but it costs $40. It’s low tech, just a battery and a beeper inside a soft, spongy ball. After the event, I’ll donate it where grandparents can check it out to play with grandkids, kids can play catch whether they have a visual impairment or not, etc. Once families know it’s out there, they can consider buying or approach a civic club like Lions International about funding a ball for them.

The new iPhone app that’s garnering a good bit of attention in the blindness community is Seeing AI. It’s a free app designed by Microsoft for I-devices. It takes a picture of text or bar codes and then reads it aloud. The entertaining part is that it will also take pictures of people and scenes. For people, it will tell you their age, gender and expression. It’s not perfect. I’ve been everything from a 77 year-old female to a 55 year-old male (after I got a haircut). It’s providing a good bit of hilarity at gatherings and sparking some interesting discussions about what artificial intelligence can do nowadays and how humans feel about it.

My reactions to this app and another one that described the recent eclipse are: bring it on! No app will be perfect and make my experience of the world be the same as a sighted person’s, but they add something to my experience. A beeping ball, an app or ability to do PowerPoint expands my choices which means empowerment in the technology field. I’ll still choose to rely on sighted friends’ reports to tell me if something “pops”.

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.