I find it hard to talk about my faith without sounding all churchy. I volunteered to do the first sermon for an inclusive ministries worship experience we’re offering next month for people with cognitive and other disabilities that may make “regular church” not work well for them.  Here’s what I wrote:

In 1 John in the Bible we read “God is love.” Think with me about what these three small words mean to each of us.

I love my Seeing Eye dog Luna. By the way, when you see her, ask me if you can pet her before petting her please. I show her I love her by feeding her, petting her and telling her she’s a good dog and taking her to the vet if she’s sick.

God loves each of us even better than I love Luna. He made you and me, perfect as we are. When people say to me, “if God loved you, he’d make you see” I disagree. In God’s eyes, I’m okay even though I’m blind. I just have to figure out how to deal with being blind like asking for help when I need it and having this beautiful Seeing Eye dog to lead me.

Just like I take care of Luna by feeding her, God gives us what we need to live. He gives us a beautiful world to live in with food and water, and air to breathe. He gives people skills to become farmers to grow food, doctors and nurses to take care of us and veterinarians to take care of our animals. He makes some of us good at music, some good at art and some good at cooking.

I talk to Luna to tell her I love her. God talks to us by giving us the Bible to read and by giving us wise people to help us make good choices. Sometimes I have to tell Luna she’s not doing the right thing. Sometimes God has to tell me I’m not doing the right thing. He tells me by my conscience that tells me what is right and wrong. Sometimes I listen and sometimes not.

Luna loves me back. She shows it by licking me and by doing her job guiding me. She keeps me safe when we cross streets and walk up and down stairs. If I fall down on ice, she stands by me and waits for me to get up.

We love God by loving and taking care of the people around us. We listen to them when they are upset. We stand by them when they fall and help them get back up. That makes God happy.

It also makes God happy when we talk with him. That’s what we call praying. Sometimes we thank him for things and sometimes we ask him for things. Just like Luna asks me for more treats!

So God loves us. We love him back by praying and by doing good things for others.  Thanks be to God!

 

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This week our City Council considered an ordinance to mandate all city communications be written in person first language. I would be a person who is blind instead of a blind person. A poor person would become a person living in poverty or a person living with economic challenges, etc.  This wording hit academe, particularly education over twenty years ago. I don’t know quite why our fair city decided to deal with the language issue now. But in the meantime, many folks in the disability rights movement, led by the Deaf have gone on to say they prefer identity first language—Deaf and proud!  I wrote to city council members stating this and suggesting when things are contested like this, it might be best not to legislate the issue.  It passed anyway!

For me, it matters less what someone calls me than how they treat me.  Sure, the words they use to describe me are part of that, but not a huge part. Just like some of my male friends can say “you and the rest of the girls…” and I won’t bristle about being belittled by the term “girls”.  Is the friend generally kind and respectful to his wife, daughters and other women in his life?

In many encounters, whether in person or with something written, I have to do a different kind of translating of how this applies to me as a particular person with particular disabilities.  For example, one of the meditations I read for today was as follows:

“Practice: Wandering in Nature”

“Psychologist and wilderness guide, Bill Plotkin, believes that to “save our souls” we need to reconnect with nature. To rediscover who we truly are—and who our brothers and sisters are—we must become intimate with our natural surroundings. The wisdom of nature can’t be understood with our thinking mind. We have to experience it with our being and let it speak to us through all our senses.

Plotkin’s own mindful walks support his insights:

Wandering in nature is perhaps the most essential soul craft practice for contemporary Westerners who have wandered so far from nature. . . .

The Wanderer allows plenty of time to roam in wild nature, and roam alone. Maybe you start out on a trail, but if the landscape allows, it won’t be long before you wander off the beaten track. Because you are stalking a surprise, you attend to the world of hunches and feelings and images as much as you do to the landscape.

. . . You will get good at wandering, good at allowing your initial agenda to fall away as you pick up new tracks, scents, and possibilities. You will smile softly to yourself over the months and years of wanderings as you notice how you have changed, how you have slowed down inside.

Through your wanderings, you cultivate a sensibility of wonder and surprise, rekindling the innocence that got buried in your adolescent rush to become somebody in particular. Now you seek to become nobody for a while, to disappear into the woods so that the person you really are might find you.”

Beautiful and well worth doing, but wandering and getting lost in nature is not possible for me as a blind person, or person who is blind! The translation I worked out is: take a few minutes each day when I wake up and hear the birds singing to just listen and let my mind wander.

How does that translate for you?

 

It was a three day weekend and I wasn’t going anywhere. This quote helped pull me out of feeling sorry for myself and into focusing on the delights I have:

Jack Gilbert’s poem, “A Brief for the Defense” says:

If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight.”

  • Playing bridge and dining with three long-term friends. We’ve shared each other’s grief, health issues discussions and they’ve welcomed my new dogs and tolerated my old dogs. Of course winning handsomely at bridge didn’t hurt either.
  • Going to the farmers’ market and trying a new item, salad on a stick. It consists of stir fried, battered cabbage, mushrooms, asparagus and radish; greasy but delicious. Saw five people I knew at the market and felt like I really belonged in Eau Claire.
  • Went to the bank and left my signature stamp behind. Luna was so excited about a second dog biscuit because it was a holiday weekend that I lost track of getting the stamp back. Before I got home there was a message on my machine from the teller. And I found a friend on the first call to take me back to retrieve the stamp. Luna got a third biscuit so she was really delighted.
  • Arranged a picnic lunch for four folks each of whom has disability issues. So some of us will go to the parade first and others won’t because of heat or walking concerns. All will dine and laugh together. One won’t say much because of aphasia. But the delight of breaking bread together with friends will be felt around the table and even under the table where Luna will live in hope of a dropped crumb.
  • Toured around town with a friend taking pictures of accessible playground equipment, boat launches, electric shopping carts, signs for closed caption devices at the movies and other signs that ADA has resulted in good changes for a poster for a display in July. It was over 90 degrees even in the evening, so I sprung for an orange cream shake at the end. Arby’s drive through offered Luna about two ounces of meat as we drove through. She’d never had free meat from a drive in. Now she’ll be bugging me to go there every day!

Delight is addictive.

 

 

Global Accessibility Awareness Day has rolled around again.  I’m still laboring in the fight for increased access and hope you are too. Access is like Swiss cheese: you’re munching along or surfing along and suddenly there’s a hole.  I guess the holes are necessary for good Swiss, but they sure get in the way of good Internet use.

PBS is running a media campaign for their show “The Great American Read” that will result in people voting and crowning one book as America’s favorite read. Their choices range from Charlotte’s Web to Fifty Shades of Grey. I’ll be voting for Grapes of Wrath, but that’s a different story. On their Facebook page, people are encouraged to post about books they love. Many are posting a picture of the cover of a beloved book, which Voiceover can’t read. So I’m posting a note occasionally asking that they type out the name of the book as well as posting the pic. Otherwise all I get is the comments like “Best book ever”; “Fabulous book” “You’ll never think of chocolate pie the same”… What book? I want to scream!

I explored Formed, a Catholic app full of books and talks about the Catholic faith with my parish’s director of religious education. We turned on Voiceover on her iPhone and started listening to some pages on the Formed app.  Its accessibility has improved a bit since (and maybe because of) my two years of lobbying them. But again titles of talks and books were often tagged such that Voiceover would only read one word like “the”. If one knew the exact title of what one wanted, one could do a search and find it that way.  It’s sort of like physical access to a building for wheelchair users being a ramp to the back door. You do get into the building, but it isn’t easy or convenient. The director of religious ed “talked to someone” at Formed and they said they’d get back to her.  I think she’s much more optimistic about the outcome of that call than I am, but the good news is she did do something.

A friend who heads a nonprofit wrote me to ask who my online donation was in honor of.  I wrote her back: “Your form was almost totally accessible. There was a check box near the end which I could check “yes” or “no” but it didn’t say “yes” or “no” to what. I always wonder about those, but reluctantly checked “yes” because I had to check something to get the form to process.  So now I know! I checked “yes” to “in honor of” Actually I didn’t mean it to honor anyone. Guess I could make it in honor of Global Accessibility Awareness Day celebrated May 9 every year, but celebrated every day by some of us!”

If you’re new to thinking about access on the Web or on your phone, try using only keyboard commands (no mouse) and turning on Voiceover for the iPhone experience.  Slow down, take a few deep breaths and give it a try.  You’ll get the hang of it pretty soon and then you’ll know why we celebrate Global Accessibility Awareness Day every year.

 

 

The dictionary defines mothering as showing care and affection. I’m lucky to be surrounded by mothering friends. They invite me to supper with them, give Luna a last bite of pizza crust, tell me I have little tiny ants coming in a crack by the back door and murder ten of them. They make a point of greeting me at a big open house for public radio and are willing to go raid the food table for me.  They feed my soul with book recommendations.

On Mother’s Day or when I think back on my mother, I’m struck by the traits we share. She fought fiercely for me to be educated by public schools long before that was the norm and the law.  I fight fiercely for access for people with disabilities to love, work, and play and pray as they wish.  She loved to stay up late reading a spy story; so do I.  She and my dad taught us to play bridge and I still enjoy it.  Unfortunately I didn’t get her artistic tendencies unless you call creative cooking an art.  I did inherit/learn her high standards which can be both a blessing and a curse.

Some of her momilies come out of my mouth automatically (or at least run through my brain when I’m around the young):

Clean your plate. There are people starving in India/China/Ecuador…

Close the door; you’ll let flies in.

Do your best.

Who died and left you in charge?

Don’t address adults by their first names.

Children should be seen and not heard.

If you want something done right, do it yourself.

Thanks people who mother. I hope you get some mothering too! In addition to writing cards to those who mother my retired guide dogs, I’ll call a couple gals I know who aren’t moms to chat. I’ll   bake cookies for finals week sustenance at church for students this week. Luna took me on a Mother’s Day stroll to enjoy the sounds and smells of spring.

 

 

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!

 

 

 

Despite the data breeches and the #DeleteFacebook movement, I’m sticking with Facebook. The opportunities it provides me outweigh the downsides, at least so far!

With Facebook I can keep up (at least a little) with young family members and friends who are too busy to email. I’ve got most of them trained to post a few words along with the snapshots of their lives they share on FB.

I can find worldwide communities of people who share my interests, whether that’s disability activism, books, or crows.

I can create an interesting feed myself from others’ posts and my own occasional memorable moments. I’ve tried hard to stay nonpartisan, and post more positive stories than negative.

I wonder where those who leave will go to get these benefits of Facebook. I hope they let us know!

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.

Loren Eiseley and others tell this story: “Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work. One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up. As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean. He came closer still and called out “Good morning! May I ask what it is that you are doing?” The young man paused, looked up, and replied “Throwing starfish into the ocean.” “I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man. To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.” Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!” At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.

This week I did some starfish picking up. I approached a Braille press about putting an anthology of well-loved poems into Braille. I have two such books. There aren’t very many more available for purchase. When I want to read poetry aloud at nursing homes, etc. to celebrate poetry month in April, it would be nice to have more to choose among. I can listen to a poem and copy it down word by word in Braille, but a book already produced would sure be easier. Getting things done in Braille is time-consuming and expensive, so I’m starting now on this project that I hope to have completed by my seventieth birthday. The employee I talked to said I could check back in a month to see if the Braille press would do it.

A researcher asked me to help out with a study she’s proposing on depression self-management for blind and visually-impaired people. What a good idea! If it gets funded, I’ll help design materials, recruit participants and run groups by phone. Hopefully this will be doing the fun parts of research, not the number crunching and writing up the study.

My diocese just announced they will stop making monthly payments to pensioners some time this summer. Each pensioner will get a one-time payment. Many of us Catholics are incensed. I’m pitching an idea that at least we should have an emergency fund these poor folks could apply to. Contributing to this could give people something positive to do with their anger energy instead of just saying “I’ll never give to the diocese again.” When I talked to the Vicar it turns out lots of people have risen up in protest and he was hopeful more would be done. I hope it goes beyond listening sessions to action!

I’ve started working on a display for the deanery’s social concerns fair where I’ll have a table about the Xavier Society for the Blind. Xavier provides downloadable large print Mass readings, Braille booklets of the same, religious books in downloadable audio and Braille and CCD (Sunday school) materials in Braille to about 3,000 clients. I want to highlight how the blind clients of Xavier are equipped to participate in parish life, and should be welcomed to do so by their parishes.

If you are looking for starfish to help, subscribe to Jen Hofmann’s weekly checklist. She has plenty of great ideas:

Americans of Conscience Action Checklist

 

 

The words of this hymn really struck me this week. ”When troubles surround us, when evils come the body grows weak, the spirit grows numb. When these things beset us God doesn’t forget us. He sends down his love on the wings of a dove.” After being laid low last week by various political events, I needed the touch of the wings of a dove or the caws of the crow. If you’re feeling bogged down, I hope the following wing brushes might help you notice some in your life.

  • Friends responded with “I’m sorry” and commitments to contact their Senators about not gutting the ADA.
  • Two right books at the right time came to my notice: Everything Happens for a Reason and Other Lies I’ve Loved and Radical Hope: Letters of Assent… It’s so good to know others are struggling and moving forward toward truth and justice.
  • The “Country Hymns” channel on Pandora with “Wings of a Dove” and other hymns of hope
  • A friend in the back row of church who (with permission) upon hearing of Luna’s reluctance to come to Mass brings her a small treat. When she spies him as we walk in, suddenly there’s a spring in her step.
  • A beautiful story on the Corvid research blog I follow about a scientist embracing their style of thinking and figuring out creative adaptations to their attention deficit disorder and dyslexia.
  • Two or three crows loudly discussing world affairs (I’m sure!) as I stood in our cold windy backyard waiting for Luna to take care of business.
  • A librarian who took the time to send out read alikes along with a notice of the next book club meeting. In case your taste runs to legal thrillers, the author she mentioned that is my new favorite is William Bernhardt.
  • Sharing meals and conversation with several groups of friends including one who laughed so heartily I thought we’d get kicked out of the restaurant.
  • As friends disappear for a week or so to somewhere warm (truly I’m happy for them!) another friend told me she saw snow geese flying north. Spring will come!