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This is What Community Looks Like

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.


Filed under: Aging Tagged: Activism, Affordable Care Act, blindness, Community

Loneliness and Community

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!

 


Filed under: Aging Tagged: Accessible Voting, blindness, Community, Loneliness

Booking a Blog?

Since Occupying Aging is an ongoing project, I’m beginning to think about a next book. Could this blog turn into a book? Maybe it would be when I reach seventy and have some profundities to add from that lofty age.

To start the process, I approached the teacher of the editing classes I’d worked with on previous books at the university. She passed me on to the gal who’s teaching it this year. She got excited about having her students’ first real editing project be working on the almost five years of blogs I have so far.

In the last couple weeks I’ve met with ten teams of two students to go over their edits. They all showed up on time, acted like young professionals and had prepared their editing suggestions well. They educated me about Oxford commas, when to write out numbers and when to use numerals, and when to use bulleted lists vs. numbered lists among other arcane topics. I plied them with hot chocolate and Luna allowed them to rub her belly if they really wanted to do so.

Last night I took cookies to their final work session on the project and listened to what they’d learned. One student spoke passionately about being sensitized about disability issues and some follow-up actions on campus she was taking. Another student commented that the most important thing she’d learned through this experience was how to work collaboratively and respectfully with an author.

The teacher said, “students very much appreciate and enjoy having a “real” project like this one, especially when it involves hot chocolate, homemade cookies, and a lovely four-legged helper dog.” Now the students are off for spring break, the teacher is off to grade their edits and I’m off to live life to the full so that by age seventy I’ll have more wisdom to share about Occupying Aging.


Filed under: Aging Tagged: Blogging, Book, Editing, Occupying Aging

Making Valentine’s Day Last a Week

Sidewalks are icy and winter is starting to get old, so I decided to see if I can make the fun of Valentine’s Day last a week.

The day before Valentine’s Day, I went with a friend who used to teach blind kids to visit a 4 year-old blind boy. She had some games and stuff to give away to him.  So we visited and played with the games to show the mom how to get him going.  He was getting whiny for a snack, so I decided I’d invent a dice game involving Cheerios for him. I rolled one die, counted the number of spots on it (one in my case) and ate a Cheerio making plenty of smacking and chewing sounds to show what a fine game it was. He rolled and counted just fine. But by the second round, he figured out how to cheat. He rolled the die and said “eight”.  His former teacher called him on it, but I said “This young man may be a politician someday.”

On Valentine’s Day itself I lectured a business diversity class at eight in the morning. To brighten it up, I promised them an appropriate joke for the day at the end of the talk. Here’s the Valentine’s Day joke I told them and circulated on Facebook etc.

What did one pickle say to the other pickle on Valentine’s Day?
You mean a great dill to me.

A friend who delivers books from the library every three weeks brought me my next bags of books and I gave her a candy bar.  It had a picture of a Lab puppy wearing a Valentine’s Day scarf.

The next day I went to lunch with a friend and she gave me a dozen eggs from her chickens.  In addition to enjoying an omelet or two myself, I’m spending the rest of the week finding worthy recipients to share real eggs with.

A friend dropped off a box of chocolates, which I needed like a hole in the head, so I regifted to a friend in a nursing home. Luna got treats which she’ll share with her retired “sisters”.

I got asked to bake for a bake sale at church to benefit a clean water project in Africa. It’s making the week speed by to figure out how to keep sharing the love. The narcissus I forced bloomed this week, reassuring me that spring will come!

P.S. February 17 is National Caregivers Day. Share some love with a caregiver you know and pat yourself on the back if you’re a caregiver! 

 


Filed under: Aging Tagged: Blind Children, Caregivers' Day, Valentine's Day

Politicking Wisconsin Style

I was asked to speak at a local rally against the repeal of the Affordable Care Act. It was slightly above zero and the sound of clapping was the muted thudding of people whacking their mittened hands together. Both Luna and I experienced technical difficulties. She was cold and crying and my fingers froze up so I couldn’t read. Next time I’ll need to just have an outline on a note card in my pocket and keep my hand in there I guess. Anyway, people said it was okay and about 200 of us agreed the Affordable Care Act should not be repealed.

I’m proud to be marching Saturday (virtually): https://disabilitymarch.com/2017/01/15/katherine-schneider/.

Here’s my “Don’t Repeal” the Affordable Care Act speech (the best part is near the end):

I’m here to represent the concerns of the 19% of Americans who have disabilities about repealing the Affordable Care Act. If you’re like me, when something you use is broken, you try to fix it. Please run or ride home after this rally and Email or call our representatives in Washington to ask them to not repeal the Affordable Care Act until they have a better plan in place.

The good things the Affordable Care Act has done and any replacement must do include:

  • Prevent health insurers from denying coverage because of pre-existing conditions
  • No yearly or lifetime caps for how much health care a person can have
  • Supports for people with disabilities to live in community not institutions and
  • Children being able to stay on their parents’ plans until age twenty-six

For those on Medicare, the ACA was phasing out the doughnut hole for prescription drug coverage, so more seniors could afford their medications. If free preventive screenings go away, many Medicare folks will not do the screenings because of high co-pays.

There’s lots more to like about the Affordable Care Act, but time is short. We the people need to rise up and tell our senators and representatives in Washington: don’t pass a budget that eliminates the Affordable Care Act until you have something better on the books.

People with disabilities as well as those who don’t currently have one need access to comprehensive and affordable health care. Medicaid block grants and per capita caps are just fancy ways of saying cuts in service for our most vulnerable citizens.

We the people deserve better! As Helen Keller said: “Our rights are the things we get when we are strong enough to make good our claim to them.”

Isn’t it ironic that a Congress 91% of whom say they are Christian votes to repeal health care for its most vulnerable citizens without a workable solution in place? Isn’t it ironic that a week that starts with the celebration of Martin Luther King Day ends Friday with the inauguration of Mr. Trump?

But wait, the week does not end there! Saturday there are women’s marches in Washington, Madison, virtually… There’s our hope! We the people will do the hard work of trying to stop the repeal of the Affordable Care Act. But if we can’t stop the repeal, we’ll work with people of good will from whatever party to craft a replacement that keeps the good stuff from the ACA.

When it all boils down, it’s we the people that keep America great for all of us. Thank you for coming and for joining me in fighting for the Affordable Care Act!

 

 


Filed under: Aging Tagged: Affordable Care Act, Wisconsin, Women's March

Is Accessibility Nice or Necessary to You?

At the upcoming Inauguration and at various marches, 30,000 free copies of Resist will be distributed. I lobbied for this ‘zine about today’s political situation to be made accessible for blind people. I sent an email to resistsubmission@gmail.com: “I’m not submitting a comic but asking you to post descriptions of images online so those of us who are blind can enjoy Resist as well. If you feel you don’t know how to do this, please contact me and I’ll coach you through it. My community needs this ‘zine too!”

When I heard nothing, I contacted the listserv Disability Studies in the Humanities and asked them to join me. At least one person did and even suggested websites with good image descriptions on them for Resist to use as a model.

We both heard back that they were swamped trying to get the comic out in time and getting all the good images they’d received online, so no accessible copy at the moment. I offered to get five images described so they could have something for us blind Resisters, but they said no thanks but they’ll get to it in a few weeks. Stay tuned!

Ouch! Here we have good and righteous people doing great volunteer work, but for them accessibility is nice, not necessary. For me, accessibility is necessary and nice!

Thank you to those of you who provide access of varying kinds. Whether it’s a ride to church for someone who can’t drive anymore, or carpentry work putting in a ramp so a new wheelchair user can stay in their home, it helps. For digital access, sending emails to inaccessible websites or lobbying your library board to only consider accessible e-book providers, more voices than the one person who has identified the need are very welcome. It takes a village to make access happen, just like it takes a village to raise a child.

As a person who needs access, I’ve moved from only asking if I NEED it to live to asking for it if I think it will give me better quality of life. Do I NEED access to a comic book like Resist? No, but nobody else NEEDS it either! What I continue to work on is not getting discouraged when access doesn’t happen. This week I’m at one for two which is a batting average of .500. I got a ride to a meeting (it’s below zero here in Wisconsin), but didn’t get anywhere with Resist.

Here’s to those who keep requesting access and to those who stand with us.


Filed under: Aging Tagged: accessibility, Disability Studies in the Humanities, Resist

Have a Hygge 2017!

NPR recently had a piece on the word hygge as did The New Yorker. It’s on the Oxford English Dictionary’s short list of words for 2016 and Wikipedia has an entry for it.

For those of you, like me, who have never heard of it, details from the NPR story follow. “Meik Wiking is the author of The Little Book Of Hygge, and he is CEO of The Happiness Research Institute in Denmark. Hygge is actually a lifestyle concept, one that’s been around for a very long time in Denmark. What does it mean to live a hygge life? It’s been called the art of creating a nice atmosphere. It’s been called the pursuit of everyday happiness. But it’s basically building in elements of togetherness, safety, coziness, savoring simple pleasures, relaxation, comfort on an everyday basis”.

Since the United Nations has judged Denmark to be the happiest country repeatedly, maybe we should learn about hygge. If you’re in to decluttering, the slow food movement or mindfulness, you’re heading in the direction of hygge. Think candles, slippers and friendly cats. My Labrador believes she was hygge long before it hit The New Yorker.

Sure enough, my public library had The Little Book of Hygge in accessible format. Bookshare had Have a Hygge Holiday (Christmas family saga with hygge themes) immediately downloadable for the print handicapped. After consulting these sources and Wikipedia (of course), I’m going to try some of the following hygge ideas:

  • Microwave single-serving mac and cheese http://www.ellaclaireinspired.com/homemade-single-serve-microwave/
  • Try a couple new podcasts: “Note to Self” and “Still Processing” to listen in on others’ worlds.
  • Work on skimming and discarding ever-growing piles of unread magazines before they take over the living room.
  • Make monthly visits to friends in nursing homes or assisted living facilities taking tea and talk. You bet I’m paying it forward!
  • Say a prayer of gratitude at the end of each day for the gifts of that day.

I wish for you a hygge 2017. And here’s my toast for you: May all your troubles during the coming year be as short as your New Year’s resolutions.


Filed under: Aging Tagged: Bookshare, Hygge

Lighting Candles

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.


Filed under: Aging Tagged: Assisted Living, blindness, disability, Mairs, Montalvan, Until Tuesday, Waist High in the World

International Day for Persons with Disabilities and Signs of Hope

December 3 is the International Day for Persons with Disabilities. As I traveled to Arizona for the National Center for Disability and Journalism awards and moved around my community, I saw many signs of hope that our world is becoming more inclusive and welcoming to the 19% of us who have disabilities.

On the flight to Arizona, I shared the bulkhead seats with a young woman who proudly told me a bit about her emotional support animal who was firmly ensconced in her lap. He was crying a lot on takeoff and landing. I was able to put my 43 years of service dog on planes experience to work and suggested she try giving him a little ice to lick. He loved it and the whining ceased. It may be the placebo effect, but we’ll take it.

In the Q and A following the speech by the winning journalist, Chris Serres, www.ncdj.org a student journalist with an invisible disability asked if she should write about disability issues or not. I was so pleased that she was told that she could and should because her experiences could give her good ideas of questions to ask and people to interview.

On the flight back from the NCDJ event, I was seated next to a truly loquacious woman who had never ever met a blind person and had many observations and questions. They ranged from “how do you read?” to the old standard “Your other senses must be much better than mine” to which I gave the usual “No, I just use them more” reply. But by the end of the LONG flight, she was bumping elbows with me in solidarity about the wonders of love. She was off to go live with Mr. Wonderful and make a new life for herself. I did manage to “nap” for a half hour and escape the torrent of questions before this introvert said anything unkind. Truly I’m glad she felt free to ask so many questions, as she said “How else do I know?” Maybe Blind Person #2 in her world won’t get quite the tsunami of questions.

I worked with a church secretary to get the readings and get familiarized with the church so I could read Scripture at a friend’s dad’s funeral. She also had not encountered a blind person in this situation before, but graciously answered questions and did what I asked like sending the readings electronically ahead of time and describing and walking through the front of the church with me. She was doing a little gentle teasing by the end, so I knew all was well between us.

A friend made me a safety pin with bells after having read my dilemma about the Safety Pin movement and “how would a blind person” know who has safety pins on. As she pointed out, it’s not perfect because the bells aren’t always jingling and it could be confusing if someone had bells on for a fashion statement, but it was a definite gesture of inclusion. So were the many kind strangers efforts to guide me through airports and around an unfamiliar university building.

Lift a glass December 3 to our rich world full of kind and interesting people with and without disabilities. Or for you more serious souls who want to improve your minds, try Jane Brody’s Tuesday Personal Health article in the New York Times about “What Not to Say to a Cancer Patient”.

 


Filed under: Aging Tagged: Chris Serres, International Day for Persons with Disabilities, Jane Brody, NCDJ

Thoughts after the Election: Resolve, Resilience and Resistance

Deep, immobilizing sadness has morphed into sorrowful but determined moving forward for me this week.

So far I’ve celebrated the referendum to add funding to our local schools that passed and a candidate’s being elected in another state who I admire.

I’ve listened as people in marginalized groups have shared their fears about a “climate” change away from tolerance and inclusion toward hate and division. Being part of a panel on aging in different communities www.wpr.org/newsmakers (November 17) reminded me that we’re stronger together when fighting for change.

I’ve read chapters from Sauls’s book: Befriend: Create Belonging in an Age of Judgment, Isolation and Fear about befriending people who voted differently from me and the disabled (had to read what the author said about my group. Bottom line: God is in charge, I’m not). Next I’ll read Uncommon Gratitude: Alleluia for All That Is by Joan Chittister and Archbishop Rowan Williams. On Twitter the tags of #upyourempathy and #safetypin have got good stuff about making peace these days. To add to the caveats about safety pins, how do blind people know you’re wearing one? Maybe it should be a safety pin with a jingling bell on it!

Also this week we lost a great musician whose lyrics often speak to me, Leonard Cohen. “There is a crack in everything, that’s how the light gets in.” —Leonard Cohen. I feel broken by the election; maybe that can be my prayer that somehow the light will get in my soul and our world.

As Thomas Edison said: “What you are will show in what you do.” I’ve signed up for rooftop solar panels. I’ll generate some of my own energy when the sun shines. It’ll also be my symbolic way of saying I’m with those who believe in trying to do something about climate change, discrimination, alleviating poverty and all those other liberal causes. I’ll try extra hard to be kind to those who believe differently than I do—maybe eventually I’ll feel it.

Will you stand or roll with me (whichever works better for you)?

 


Filed under: Aging Tagged: Election, safetypin, upyourempathy