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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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!

This week there was another school shooting with seventeen killed. The Congress recessed for a Presidents Day holiday without doing anything about gun control or for Dreamers. But somehow they managed to find the time and the will to pass HR 620 the Americans with Disabilities Education and Reform Act, which guts the ADA. What are they thinking!

Although it is benignly named the ADA Education and Reform Act, this bill removes the consequences for businesses with architectural barriers that violate the ADA until an individual with a disability is denied access and provides a specific legal notice describing the denial of access and nature of the barrier.  The individual with a disability must then wait up to six months for the business to make “substantial progress” in removing the barrier. Substantial progress is not defined. Half a ramp, Braille numbers on half the elevator panel? Wheelchair access to the men’s room but not the women’s?

Additionally, the bill requires the Department of Justice to provide education and guidance to businesses about ADA requirements. If lawmakers took a look (or listen) to www.ada.gov they’d find that is already being done. The bill gained traction because of some highly publicized drive-by suing of noncompliant businesses in a few states. Instead of dealing through their state bar associations with these unscrupulous lawyers, this bill punishes the millions of us who need access on a daily basis. What other group in the U.S. would we tell to wait six months (at least) before going to a movie, going to the bathroom or using a website? Is access a right or “nice” if I am kind and want   to provide it? The ADA said twenty-eight years ago it’s a right (with some limits like all rights). HR 620 says differently.

This week also was the start of Lent when Christians are supposed to pray, fast and engage in alms giving to help empty the garbage in our lives and prepare to live as Easter people. I’m praying for all of us to realize that disabled people, Dreamers and school kids are all my neighbors and deserve basic human rights. I’m trying to fast from casting aspersions on the motives of people in Congress that we elected to work for the common good. It would be so much easier to give up chocolate! My alms giving will be working to defeat the Senate version of HR 620 and support groups like Adapt that give this issue visibility.

Please walk or roll beside me!

The New Year is well underway and cabin fever has set in, at least at this cabin! My plan for fighting cabin fever involves trying some new things. This week I went to a free cooking class at an upscale grocery store. The teacher demonstrated making grain bowls. You take a grain like quinoa and chop up all sorts of vegetables to look pretty on top of it and then add a vinegar and oil dressing. I don’t think I needed a class, but the eating was good and it was a pleasant way to spend a cold, dark February evening. I did learn that quinoa is a complete protein.

I attended a readers’ theater program at the library. I was sitting with a friend in the front row. In their final piece, the readers danced around pretending to be a girls ball team warming up by doing a little cheer: “Woof, woof, bowwow. We’re the best”. They danced about a foot from Luna’s nose woofing wildly. She didn’t move a muscle! I just wish I knew what she was thinking about crazy humans.

In one of my book clubs we’re reading a book of the Bible, Isaiah and we’re each reading a different commentary on it. I read one lightweight commentary, Wikipedia and a serious commentary that tried to decide whether the Suffering Servant had a disability. The little bits of Isaiah that show up in Handel’s Messiah or are often quoted like “You are the potter, we are the clay” speak to me. But the rest of the 66 chapters could be condensed in my opinion.

After my advocacy effort of writing an opinion piece for the Chippewa Valley Post about how Delta Airline’s new service and emotional support dog regulations get it wrong, I did an interview for television on the same point. They used two sentences of a twenty minute interview and my sound bite did not sound brilliant. Now I know how those politicians feel!

I’ve also volunteered to be an ambassador for Chippewa Valley Votes, as they try to register more people. Then I heard that Eau Claire will have the world series of beep ball (baseball for the blind) this summer. So I called up Visit Eau Claire and volunteered to be their consultant on how to make their arrangements for the visitors blind-friendly.

Luna turned eight. The highlight of the week was a birthday party for her, hosted by her 14 year-old predecessor who has a big fenced backyard. Luna invited a five year-old dog who will play chase with her. So the two younger dogs ran around inside and outside while the hostess dog sat and watched and looked for scraps from the humans’ brunch.

Trying new things and reading a few thrillers mostly chased away my winter blahs. Only 6 more weeks of winter?

 

 

I’ve traveled independently all over the United States for the last forty-five years with Seeing Eye dogs. Delta Airlines recently announced new policies for service and emotional support dogs which will make that travel more difficult and won’t solve the problem of fake and poorly behaved service and emotional support dogs that they were meant to address.

I’ve flown with my Seeing Eye dogs to family vacations, job interviews, funerals and professional meetings. I’ve ridden on four-seater planes and jumbo jets. My dogs and I have met mostly wonderful fellow passengers and airline staff. We’ve encountered a variety of other service and emotional support/comfort dogs over the years, most of whom were well behaved and just trying to get where they were going as we were.

In the last few years as more airlines have allowed “emotional support animals” as well as service dogs, there have been more problems with poorly behaved animals and fake service dogs brought into the cabin by someone who just doesn’t want to pay for their dog to travel in the cabin. I’ve encountered a few of these dogs who wanted to attack my Seeing Eye dog as I passed them going to my seat or barked piteously throughout takeoff and landing, clearly scared out of their minds by the plane noises and air pressure changes. The Seeing Eye and other guide and service dog training schools provide a lot of training to us dog handlers about dealing with our dogs in crowded stressful situations like flying is these days. Emotional support dogs and their handlers get no such training and support. For example when I shared a tip about try giving your dog a sliver of ice to suck on while taking off or landing to help their ears, the barking dog quieted and the owner was able to go back to getting emotional support from the animal.

Delta’s new rules, which will take effect March 1, require uploading a proof of rabies vaccination form each year two days before a flight and checking in at the Delta service counter for each flight to have the dog’s status verified. Emotional support dogs must also have a letter from a doctor saying they are needed and will behave in public. Some of the problems with this policy are:

What if I need to travel in an emergency and haven’t registered my dog’s vaccination records with Delta?

What if other airlines adopt this policy? How many do I need to register with to be safe?

What if I’m rebooked from another airline onto Delta and I haven’t registered with them?

What if I’m traveling with friends or family who want to check in online or use kiosk or curbside check in?

The Air Carrier Act and the Americans with Disabilities Act which both cover parts of my flights through the Friendly Skies already state that the service animal in the public situation must be well behaved or it can be made to leave. They also stipulate that a person with a disability can’t be discriminated against. The extra registration and having to check in at the counter each flight seem like discrimination to me. A letter from a doctor or mental health professional stating that an emotional support/comfort dog is well-behaved in public can be faked and/or written with kind intent but no thought of the actual travel situations the dog will be in.

Apparently the Department of Transportation will roll out some new regulations about “emotional support dogs” later this year for public comment. Please join me in encouraging Delta to put their regulations on hold and let the DOT meet with guide and service dog groups, as well as airlines to work out something that is fair and effective. It’s in all of our best interests to have safe travel and not to have excess burdensome and ineffective rules.

To contact Aviation Consumer Protection Division at the U.S. Department of Transportation with your thoughts, go to https://airconsumer.dot.gov/escomplaint/ConsumerForm.cfm,

Recently my Seeing Eye dog and  I were  out shopping and were accosted by a Christian who wanted to know if I knew that the End Times were coming “when the blind shall see” (Isiah). Not wishing to fight, I said “yes”. She then said “doesn’t that make you happy?” To which I answered: “Well I’m pretty happy now, I guess I’ll be happy then.” After a bit more fruitless discussion I escaped. Since I live in a small town and have served the public on some boards, she found my phone number. The next day she phoned me to see if I’d like to discuss this further. I declined firmly but politely.

I’m in an ecumenical book club that has decided to discuss Isaiah next month. When we talk about the “blind shall see” passages, I want to go beyond saying “it’s poetry, so probably a metaphoric use of blindness.” Even if one takes the literal view from the Old Testament that disabilities are blemishes, preventing temple service and requiring a charitable response from others, that’s not all. Moses, the Suffering Servant in chapters 52 and 53 of Isiah and King David to mention only three luminaries from the Old Testament had disabilities.

The equating of blind with ignorant and the automatic assumption that we need and want fixing cause great harm to those of us who are blind. It makes us into beings who always need charity and have nothing to offer in return other than gratitude.

My God doesn’t think that way. God created me and I believe (at least on good days) that I too am “wonderfully made.” This view of disability leaves me free to use my talents to love others and work for justice instead of waiting to be healed in this world or the next.

Blindness (or any disability) has its difficulties:

  • I have to ask again and again for what I need from others
  • There’s a bubble around me in public such that people hesitate to approach me
  • It costs more to buy adaptive equipment than regular gizmos.
  • Sometimes I’m discriminated against.

    I deal with the frustrations daily which consumes more energy than not being blind. But there are also the positives of being blind:

  • Humorous things happen as I interact with a sighted world.
  • I’m more aware of the interdependence of us all.
  • I know that many people are helpful most of the time.
  • I get to have an intelligent being, my guide dog, by my side as I walk through life.
  • The frustrations both from the blindness and from interacting with “spiritually blind” people make me stronger.

If you feel compelled to share your good news about the future as you understand it where the blind see, or if you want to pray for my sight to be restored, please consider doing the following first:

  • Get to know me and my world before you decide how to make it better.
  • If we’ve discussed faith and we’re at the level of knowing each other where you’d be comfortable with me praying for you, then feel free to ask if I’ll pray for you and offer to pray for me as well.
  • Then ask how you can pray for me and do the praying from my perspective of needs. I may ask for healing, for strength to fight discrimination or for patience to deal kindly with others’ responses to my disability. If I ask for something you don’t agree with, like a driverless car that’s too expensive and might malfunction and bring us all to Heaven before our time, pray for more accessible transportation options instead.

 

If you want to share your best guesses about Heaven, listen to mine as well. Maybe together we can make a little Heaven on earth where both the sighted and the blind understand that we all are wonderfully made and have gifts to share.

It’s that time of year when all those “best of” lists come out. An NPR blog I was reading talked about fifty good things that happened this year (mainly in pop culture). Things that made my personal list included getting solar panels, recording a lecture for Wisconsin Public Television on my version of Disability 101 and having my poem “Hope of the Crow” published.

On my favorite books list I’d include: My Beloved World by Sotomayor, and novels by Louise Penny, Michael Connelly, Craig Johnson, Daniel Silva and Jefferson Bass.  For spiritual reading I particularly liked Brian McLaren, Joan Chittister and Sarah Miles.

I reacted to all this looking back by firing off thank you emails to people I’ve worked with on advocacy issues this year, my Peace and Justice group at church, co-leaders of book clubs, university staff who helped me sponsor an internship for a student with a disability, the director of the National Center on Disability and Journalism and the English professor whose classes have worked on editing my next book. They and my friends have been candles in a dark year for me. I’m grateful for the light and warmth they share.

If books and reading more are on your year’s plan, here’s a fun quiz to find out what kind of reader you are: https://www.readingpeoplebook.com/quiz

May your New Year be full of love, laughter, wisdom, wonder and warmth. Warmth was added because the wish was written after a trip to the backyard with Luna when the temperature was minus ten. We’re working on a new command “hurry!”