Archives for posts with tag: blindness

As I begin my 70th year, I’m feeling an urge to do things to get ready for the next decade. The first of these is to focus on the daily (hopefully) bright spots in life.

This idea was reinforced for me by a Facebook post by Shane Burcaw. He’s a young man in his ‘20’s who has spinal muscular atrophy, website www.laughingatmynightmare.com He posted a week of things that made him smile.

Here’s mine for my birthday week:

Birthday: Cards, calls, meals with friends, useful presents like a new pair of jeans and chocolates to share at bridge.

Day after: Call promising to visit in the summer. I like the celebrating to last a long time, but this may be a personal record if she visits in July!

Birthday plus 2: Luna’s nose led her and subsequently me to a missing bag of groceries. Unfortunately the frozen fish was no longer frozen and could be smelled three feet away so had to be pitched. But the nose knew! As they say at the Seeing Eye, “Trust your dog!”

Birthday plus 3: Meeting with my Methodist ladies book club, aged 69-90-plus reminded me of the truth of this quote:

“Cherish all your happy moments; they make a fine cushion for old age” Booth Tarkington

We laughed and grumbled about the weather and life in these times. We agreed to pray for missing members’ health situations, even though they didn’t want us to worry about them. We drank coffee and ate donut holes. We even talked about books (but not much).

Birthday plus 4: Someone I know is writing a Federal grant and asked me to be part of it if it gets funded. It’s due pretty soon, so I suggested to her that she send the text of it to me by my birthday as a present. She did and I received it as probably the oddest present I’ve ever gotten. Candy, beer, clothes,…and a grant proposal to review!

Birthday plus 5: It’s National Pets Day and Grilled Cheese Month, how much better could life be?

Birthday plus 6: Lecturing an eight AM business diversity class I got the following questions among others: Do you like to feel faces? Is it hard to start working with a new dog? And where can’t service dogs go? To this last I said I didn’t take the dog into the procedure room when I have a colonoscopy and then explained what that was. I think based on their gasps these young people may be okay with disabilities but getting old enough to have a colonoscopy not so much!

Your challenge, should you choose to accept, is to do a week of jotting down what made you smile each day. I’d love to read it! Might even make me smile!

 

 

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Where do you belong? In your town, your workplace, your family, your place of worship, your neighborhood bar…? I was pondering the belonging question this week after being in a focus group for a student’s study on the sense of belonging of blind employees in academe. The other members of my small group were near the beginnings of their careers and I was retired so I got to pass on some observations that I hope help them.

To me, belonging feels a lot like friendship in that it seems you put in a lot of effort and if you’re lucky you get some results. We all joked about graduate school which was a community of shared suffering where belonging was assumed. Complaining, gossiping and celebrating together happened naturally. To some degree group members said they felt this camaraderie at their work places but it was a lot less than in grad school. Blind people have to work extra to produce work in many situations because of technological and other access issues. So having time to engage in the social encounters that make for a sense of belonging is hard.

Also there’s the problem of acceptance by nondisabled folk. The Edwin Markham poem “Outwitted” deals with this issue:

“He drew a circle that shut me out-Heretic, rebel, a thing to flout. But love and I had the wit to win: We drew a circle that took him in.”

As a blind person I have to feel safe about my disability-related needs being met before I can feel much belonging in a group. For example if papers to be discussed are handed out at a meeting and not provided electronically ahead of time, all of a sudden I don’t belong or have much to contribute. If there’s a sign posted “Happy Birthday Sue” but I’m not told, do I belong?

A lot of my sense of belonging has come from doing what Markham mentions in the second half of the quote: drawing others in. I’ve helped start four book clubs; I work to make other outliers feel comfortable in the backrow gang at church. This week I met with a group of Christians trying to start an inclusive ministry service for people with cognitive and other disabilities to have a quarterly worship, Sunday school and fellowship where all are welcomed and get to use their gifts to serve the community.

When we both give to and get from a group we belong. I’ll never forget when one of my guide dogs retired and I threw her a party. About a hundred people came including workmates, daycare kids from the campus daycare, the mail carrier from the neighborhood, the chief of the campus police, etc. She got so many unauthorized treats she didn’t even want breakfast the next day—a first for that Labrador! We belonged to our community.

My advice to the young professionals was:

Expect you’ll have to do extra work to belong. You’re not crazy if you think it’s hard work!

Reach out and bring others into your community.

Be frank about disability needs up front so that gets settled and you can put your energy into enjoying the interactions.

You also can belong to communities because of your disability and they’re wonderful too.

Blind people like to game too, but most mainstream games like Tetris and words with friends are inaccessible. Four years ago a developer Marty Schultz started developing Blindfold Games and now has over 80 games at the Apple store. www.blindfoldgames.org 8,000 copies of Blindfold Bowling have been downloaded, for example.

This week he was told by the Apple store he couldn’t market these games anymore but must crunch them down into a few apps. This would take a lot of work for very little profit. Blind people would lose the fun of gaming like their sighted peers enjoy and teachers of the blind would lose a fun way to teach their students how to use their iPads and iPhones.

As the developer’s blog made the blindness community aware of this horrible situation, advocacy efforts sprouted like mushrooms. Many posted their dismay on social media. An unknown number emailed or called Apple’s accessibility line. I contacted several reporters on the tech beat hoping to get the story out to the sighted world, but none responded.

But somewhere, somehow, something got to Apple and they changed their minds! In addition to celebrating the win by playing a few rounds of blindfold bowling, I’m wondering how to get Apple to give this developer an award. There are many more lucrative venues he could be marketing to, but I think he should be publicly thanked for making sure blind people can enjoy the fun of gaming too. If you have ideas, please let me know.

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!

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.