In New York, there’s a “Humans of New York” project. A writer and photographer Brandon Stanton has published two books now profiling and picturing “ordinary New Yorkers in the most extraordinary of moments”.

In Eau Claire this year, sixth graders at a local middle school did a project interviewing community members and writing summaries of what they learned from that person. Three university students took photos of each human. The remarkable humans ranged from a nurse to a soldier; from a jump roper to a turkey caller; from a CSA farmer to a yoga instructor; from a couple who got a wheelchair made for their Lab who was paralyzed so he could keep moving to a couple who run a shelter for senior dogs. A young man who is Deaf and is in school to become an architect or engineer, someone with Asperger’s and I represented people with disabilities active in the world.

Remarkable Humans picThe coaching and teaching that helped these sixth graders research their human, dream up good interview questions and do the write-ups was amazing to me. Several of the students read part of the welcome speech at the celebration event. I got to meet one set of parents of one of my interviewers and hear from them how appreciative they were of the great education their child was getting in our public schools. I’ll go to sleep smiling tonight thinking that someday this city and this world will be run by kids like these. Remarkable humans are all around us.

Sometimes a “news” story just jumps out and grabs me. For example, Monday’s Huffington Post had an article on Mercury being in retrograde four times in 2016. It explained that Mercury is in charge of communications, so when it’s in retrograde, don’t sign anything, don’t take on new projects, etc.

I’m no big fan of running my life by the planets and stars, but had been thinking about the next phase in my Occupying Aging journey as I prepared for a talk to a church group. I skimmed over ninety books written about aging since I published Occupying Aging to see if anything new had been invented on the subject—not much has! I found four memoirs that are now on top of my must-read list:

  • Fly While You Still Have Wings by Rupp
  • Growing, Older by Gussow
  • Solace by Sojourner
  • Old Age: a Beginner’s Guide by Kinsley

I’m feeling like I’ve achieved maximum benefit possible in some of my volunteer activities and it’s time to back away.  “But what’s next?”  my busy as a beaver self asks.  Perhaps some recharging by reading, but also by listening, laughing and taking a Sabbath from some of the busyness.

Since it’s spring in the Midwest, one of the sound sources I’m listening to these days is the birds. As Emily Dickinson wrote: “Some keep the Sabbath going to Church — I keep it, staying at Home — With a Bobolink for a Chorister — And an Orchard, for a Dome.” Good classical music on public radio renews my soul. Listening to people describe the character of a colleague who died recently reminds me of the power of attentive listening in relationships.

As to humor, life is good at presenting me with that. As I was selling one of my books to a gal after a luncheon where I spoke, Luna stuck her snout into her open purse and almost had the slice of bread the gal was taking home. She didn’t quite get it, but the gal didn’t want it after Luna had breathed on it, so the trash won.

Occasionally those funny e-mails that circulate rise to the guffaw level. A recent one from Richard Johnson’s adult life-long ministry listserv about God’s plan for aging qualifies. In his nine important lessons to remember for aging, number 1 was “Life is like a jar of jalapeno peppers. What you do today may be a burning issue tomorrow.”

Sabbath by Dan Allender with its emphasis on spending time reveling in God and his creation will jumpstart me on this next phase of my Occupying Aging journey, I hope.

Stay tuned and don’t be a stranger, okay?

Want to go beyond “nice” to be an awesome ally for people with disabilities?  Consider some of the following moves:

  1. Dig deep; don’t take news reports of cures for disabilities or technological fixes for disability issues at face value. Sometimes a press release about a cure being just around the corner means the researchers need more money. Recently Facebook trumpeted that they would label pictures with captions describing them. Labels say things like: “may be a person”, “may be outside”.  That’s mildly interesting but it might be good to know if it was the Mona Lisa or Adolf Hitler!  Ask people with disabilities what they think of the new cure or technological fix before getting too excited.
  2. Listen to what words you use to describe people with disabilities. You may be a caregiver for a person who has Alzheimer’s, but you are not a caretaker. They are not property! Comments I hear like a recent one from a good liberal exhorting people to do something “unless you’re in a wheelchair and can’t do anything” are not meant but are said.  Our language is full of slights like “I’m so blind!”, “That’s really lame” etc.  The only way I know to change the stupid things I say is to listen for them.  Maybe some kind soul will tell me, but living in the Midwest they may be too polite to do so.
  3. By all means offer help to anyone whether or not they have a disability, if it seems like they need it. Then listen carefully to their response and act accordingly. “Are you okay?” is not an offer; “May I help?” is.
  4. Offer to do things with us not for us. The company is appreciated as much as the help.
  5. Get to know us individually. The initial encounter may well be awkward—push on through. If you just know someone with a disability well enough to call them “inspirational”, you don’t really know them. Just like you, they may be awesome, inspirational or just plain dull at any given moment.

One out of five people, or one half of people over sixty-five has a disability. Do your friends reflect those statistics?

  1. Work to be accessible yourself. Write a few words describing the picture you tweet or Facebook. Arrange your next party in a wheelchair accessible venue. Get in the habit of thinking “if I had a friend who was blind, deaf, or used a wheelchair how would I accommodate them?”  Those aren’t the only disabilities in the world, but they’ll start your thinking.  The more you think about that question, the more likely you are to make a friend with a disability.

Our radar tells us when we’re near potential awesome allies. :) (Grinning face icon!.

What’s your favorite season of the year? According to repeated Gallup polls, spring rates highest with 36% favoring it. Summer and fall are almost tied and winter brings up the rear.  Even before I checked the polls to know what to think, I’d decided I favor spring. Even with losing an hour of sleep when we spring forward and the nuisance of spring allergies, it’s still a winner in my book.

Some of the best parts of spring (in the northern Midwest) include:

  • Honking of ducks and geese heading north
  • Birds singing heartily to establish territories and garner interest from the opposite sex
  • April being poetry month means one can even find poetry in some newspapers
  • My birthday is in spring so I can stretch it out for a month of celebrating
  • Most bugs are not out so one can sit outside without getting chewed up
  • Vidalia onions, artichokes, asparagus and strawberries and rhubarb, are available at reasonable prices
  • Spring flowers make walks a treat for the nose, especially the lilacs

If it takes books to convince you to love spring, let me suggest Chasing Spring: An American Journey Through a Changing Season by Bruce Stutz and Spring by Steven Schnur (acrostic poems about the season).

Enjoy the births and rebirths of spring.

I was emailing with another blogger about what picture to use to represent a blog we were writing together. Somehow she (who is partially sighted) challenged me to come up with a picture that could represent a nonvisual example of perspective.  I suggested “a picture of someone in Wisconsin wearing shorts and someone in Florida wearing a winter coat with a sign saying “Fifty degrees F; it’s a matter of perspective.” I began to notice situations where a blind person’s perspective on a situation was radically different from a sighted person’s perspective. Examples follow.

This week, with a good bit of fanfare, Facebook announced that they were automatically captioning pictures that people post, so they’d be accessible to those of us who are blind. I eagerly checked my Facebook feed, which I’d swear is about 70% pictures. The automatic captions were like the following: “May be a picture of a person indoors”. “May be a picture of outdoors”. Now that is amazing, I agree that a computer can recognize pictures of objects and decide if it’s inside or outside, but it’s not a real game changer for me. I will still bug my friends to caption their own Facebook offerings with “beautiful sunset on Lake Superior” rather than their usual “Wow, look at this.” It’s all a matter of perspective, Facebook is quite pleased with themselves; I’d give them one star out of four.

Second example of perspective: Freading got back to me about their app not working with voiceover. They said thanks for the idea and we consider your case closed.  They’d heard my idea, probably passed it on to somebody in charge of keeping a list of good ideas and considered it settled. I want to read a Freading book and can’t using voiceover on my phone. For me, it won’t be done until I can read that book.  So I contacted the library access person who will contact Freading and see if as a purchaser of the software, the library gets further in requesting access. Another one star out of four from my perspective.

Frequent discussions in the disability communities where I hang out electronically involve what to do about able-bodied people calling us “inspirational” for all the wrong reasons: like how well someone uses a power wheelchair, instead of how qualified they’d be for the job they’re interviewing for. Disabled community reaction of irritation-rage; able-bodied community reaction of awe at the little things and hurt if irritation is expressed. This week I had this experience when I read a prayer out loud from a braille copy of a book and someone asked me to do it again next meeting because it was “so powerful” that I could read.  My irritation was aroused but I knew her well enough to know she meant no harm. Since I’d asked her to read several times, I just said “I guess it’s fair for you to ask me to read.”

Note to self after all these ruminations about perspective: next time someone pisses me off, perhaps I should put a lock on my mouth until I put myself in their shoes for at least ten seconds. Could be a lifesaver as the political season drones on!

 

 

What makes a perfect birthday for you? I think it depends partly on one’s age. Recently I hit one in the mid ‘60’s, not a milestone, just a day—but it turned out perfect. Perfect for me means lasts a long time and includes friends, fun and fecundity/productivity. (Hard to find that last “F” that meant what I wanted to say!

Tidbits of advice that jumped out at me from emails, Twitter and Facebook that day:

  • Challenges are what make life interesting. Overcoming them is what makes life meaningful.
  • Stay true to yourself and don’t be invisible after sixty!
  • Everyone dies, but not everyone really lives!
  • Being holy means being whole.
  • Two things define you: Your patience when you have nothing, and your attitude when you have everything.
  • “Only one page is left in the book of my life. His name fills that page, His everlasting kingdom.”—Rumi
  • “I encourage you to bear witness to Christ in your personal life and families: a witness of gratuitousness, solidarity, spirit of service.”—Pope Francis
  • “I wish faith wrapped you in a bubble, but it doesn’t, not for long.”—Anne Lamott
  • Recognize the good in your life.
  • Live every day as if it’s your last, embracing each experience as if it’s your first.

And a great question: “What is on your happiness list?”

The birthday started a couple weeks early with a lunch with a friend who was going on an extended vacation.  The actual day started at 3:15am when my trusty guide dog announced she needed to go out.  It was so still out at that time it was almost beautiful and it wasn’t precipitating.  Luckily we could both sleep in a bit. Work for the day included advocating for Freading to be made usable with Voiceover. The company had blown me off with “thanks for your idea”, so I got the library’s accessibility officer to contact them. I wonder if he’ll be blown off as quickly since it’s libraries that purchase Freading so their customers can download electronic books on demand.  Then I did some work on an upcoming talk for student members of the Society for Human Resource Management.  Many of them have heard my basic talk in a business diversity class, so I’ll call it Disability 2.0 and hit some of the same core points but do it differently.  Basic points:

  • Go out of your comfort zone.
  • Treat those of us with disabilities as equal to you but not the same.
  • Ask “how can I help?”
  • Enjoy figuring out what needs to be different like solving a puzzle, not like a chore.

Then lunch with a friend, a nap, two hours of reading (to get bills tended to, birthday cards read and inaccessible chores on the computer completed). I emailed the inaccessible sites about what they need to do to become more accessible (basically get rid of CAPTCHAS).  The day wrapped up with supper with friends and settling down to finish The Martian. I even got to start a book for next Tuesday’s book club: The 100-Year-Old Man Who Climbed out the Window and Disappeared by Jonas Jonasson. Maybe it’ll inspire me to strive to be 100!

The birthday month will rock along with a few more meals with friends already on the schedule and other unknown blessings. Savor the joy when your birth day/month comes along!

As I was growing up, I frequently was told “Don’t act blind.” That meant don’t reach out to feel things and don’t exhibit blindisms like rocking back and forth or putting fingers in your eyes. People avoid using walking canes, hearing aids, etc. because they’ll look like they have a disability. The book How Not to Act Old, although partially tongue in cheek, also gives much advice. Topics include what to talk about, what to not talk about, including your chronic health concerns, what to wear and what kind of pet to have. All this avoiding of looking disabled or old assumes it’s bad to be old and disabled. I disagree!

George Schofield wrote about the same issue in a recent Next Avenue article:

“I already wear hearing aids to help with mild loss. Now I have fallen. If more age-related issues start stacking up, will people stop taking me seriously or question my competence?”

A blogger from www.assistiveware.com offered this guideline among others for Autism Acceptance Month (not Awareness Month):

“We want to live well, not become normal. Many autism interventions focus on making autistic people look more like non-autistic people. Common therapy goals. Include increasing eye contact and reducing unusual movements.

These aren’t priorities typically selected by autistic people ourselves. More common priorities include reducing the impact of some of the downsides associated with autism, such as anxiety and sensory hypersensitivity; learning skills needed to succeed in education and find employment; and accessing supports and accommodations to assist with daily living.

There may be intolerable costs associated with a focus on achieving an appearance of normality. Eye contact may feel painfully intense and intrusive, or it may be impossible to simultaneously make eye contact with someone and understand their spoken words. Staying still may require a vast amount of attention, leaving little left for learning. Hand-flapping may be an expression of joy, or a way to regain a sense of where one’s body is in space.”.

Another way to view these outward signs of disability and/or aging is as points where we can take the hero’s journey and face our greatest fear. So I appear old, blind, mobility-impaired, so what!

In Disrupt Aging: A Bold New Path To Living Your Best Life At Every Age, Jo Ann Jenkins talks about making realistic choices as aging happens and figuring out how to do what’s important instead of succumbing to the “I’m too old for that” agist attitude so prevalent in our society.

It’s about owning the disability and actively working to meet one’s needs, not hiding or denying it. It reminds me of the Japanese art form kintsugi where gold dust mixed with lacquer is put in the cracks of a broken object. As a philosophy, it treats breakage and repair as part of the history of an object, rather than something to disguise.

Poet E. E. Cummings said: “To be nobody-but-yourself — in a world which is doing its best, night and day, to make you everybody else — means to fight the hardest battle which any human being can fight; and never stop fighting.” Or, as Dr. Seuss said: “Be yourself because those who mind don’t matter and those who matter don’t mind.”

This blog post from the American Foundation for the Blind: “Big News: Twitter Is Adding Alt Text for Images” got me really excited. The post can be found on the web at:

http://www.afb.org/blog/afb-blog/big-news-twitter-is-adding-alt-text-to-images/12 Now you can tweet me pictures that you have described in an alt text tag.

It’s a five minute process to do this the first time, even if you’re as technologically unsophisticated as I am. Follow these steps:

  1. Power down and power up your phone to be sure the latest version of Twitter is installed.
  2. Open the Twitter app and go to settings and accessibility within settings.
  3. Check the spot that says add descriptions (or words to that effect) and you’re ready to go.

When you next tweet a picture, the app will automatically ask you if you want to describe it, which of course you do because you want all of your followers to know what the pic is even if they can’t see it. The first person I follow on Twitter who does this can choose between my publicly thanking you or my silent gratitude. Those of you who maintain a Twitter account for a nonprofit or public organization, please lead the pack! Not just because it’s the law, but because it will let Facebook and others know they could do likewise.

Cheers to Twitter and to you when you use this labeling process.

March 8 was International Women’s Day. I celebrated by leading a discussion of two memoirs My Beloved World and Prison Baby and memoirs in general for a book club. Then I sent the following email to about fifty awesome women I know.

“Because it’s International Women’s Day, I wanted to celebrate the awesome women I know, like you. Here are some Maya Angelou quotes for you:

  1. “If you find it in your heart to care for somebody else, you will have succeeded.”
  2. “My great hope is to laugh as much as I cry…to get my work done and try to love somebody and have the courage to accept the love in return.”
  3. “While I know myself as a creation of God, I am also obligated to remember that everyone else and everything else are also God’s creations.”
  4. “It may be necessary to encounter the defeats so you can know who you are, what you can rise from and how you can still come out of it.” Thanks for being you.”

Another day I participated in a state hearing on the redesign of long-term care in Wisconsin and in the evening spoke at city council about a street project in my neighborhood. I was moved by these two experiences to write the following letter to the editor of the local paper:

“There is Hope for Democracy!

Like many, I’m discouraged about national and state politics and find myself saying “surely we can do better.” Monday I was privileged to participate in two examples of democracy that reassured me that we really can.

I went to a hearing on long-term care in Wisconsin, specifically Family Care/IRIS 2.0. About 150 people gathered to give feedback to state officials about their concept paper. The audience was composed of parents of adults with complex and major disabilities, advocates for the elderly and disabled, a few people with disabilities and professionals in the fields of service to the elderly and disabled. Parents and other caregivers shared passionately about struggles and joys of caregiving and trying to put food on their tables at the same time. Major and minor changes to the plan were suggested. State officials and our two state representatives listened respectfully.  Afterwards many people hung around to greet old friends and network.  Whether any or all of the changes suggested will be enacted remains to be seen, but people felt heard.

Later in the day about forty neighbors and I gathered at City Council’s Monday night open session to give feedback on a proposed street project at the corner of Park and Summit Avenues.  Again, many opinions about which plan was best were expressed. People were civil and discussion was good.  Afterwards small groups talked and neighbors were neighborly no matter which plan they had espoused.

Surely these open, respectful discussions of issues are not unique to Eau Claire. Can I hope that we can find candidates who will do likewise in Madison and Washington?”

As I thought about the lack of handouts in accessible format at the state hearing, I sent the following email to the agency’s general mailbox:

“When I went to the Family Care/IRIS 2.0 hearing in Eau Claire, I noticed we met in an accessible facility and there was a sign language interpreter. Good job! Now as we round the corner to the second 25 years of the Americans with Disabilities Act, there’s another kind of accessibility you need to cover, access to materials for the blind and visually-impaired. Whenever you provide handouts in print (as you did at this hearing), you need to have several copies in large print and at least a couple in braille. You didn’t. I’m sure this is just an oversight, but if you don’t know where to get braille copies made, let me know and I’ll tell you. Please also pass this on to other Wisconsin governmental units that have public hearings.  Thanks for helping provide access.”

I then sent the note to two listservs of blind people in Wisconsin for their ideas of how to get some traction for this idea.

When I looked at Twitter, lo and behold, an inaccessible spelling challenge from the New York Public Library. I sent an email to a specialized librarians’ listserv, hoping they’ll educate their colleagues as follows:

“Today the New York Public Library had a spelling quiz they tweeted about. I’m a sucker for games so of course I clicked on the link. Before my screen reader had read the first question, I was told that it had timed me out. I understand they don’t want people to look the words up, but it’s just a game! If you must have a timed version of something on your website, also have an untimed version for those of us in the slow lane!”

I even ventured onto the NYPL site and virtual chatted with a librarian who said they’d submit my suggestion to the right place. I do wonder with all these suggestions out there, will anything be more accessible a year from now?

 Late Breaking News:

Somebody from a listserv knew somebody from the NYPL and within two days this link for an untimed version of the spelling bee is up: http://pages.email.nypl.org/spellingbeequiznotimer2016. YES!

At the end of the week I’m looking forward to watching a movie with friends and playing bridge with another group.  Not “inspirational”, just an ordinary week!

 

 

Geese are flying north and seed catalogs are arriving, so spring must be coming! Somehow that’s making me notice people blooming where they’re planted.

A few examples I’ve noticed this week:

  • A literacy teacher by day runs a once-a-month family literacy event in a very poor part of the county, complete with free supper, program and free books for each child who comes.
  • A friend living in an assisted living facility goes down the hall to read with a neighbor who has dementia so the neighbor’s husband has some time for himself.
  • Various websites, listservs and Facebook pages of info and support for people with various disabilities maintained by people with those disabilities.
  • People on the pet food program for elderly/disabled/low income folks taking care of animals for their neighbors who’ve landed in the hospital or nursing home.
  • A retired grade school teacher teaches Sunday school and puts all that teacherly wisdom into great lessons for those kids.

A recently retired friend visits weekly a couple former colleagues who live in nursing homes.These blooms inspire me. As Mother Teresa said: “Not all of us can do great things. But we can do small things with great love.” What blooms are you seeing?

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