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What If Wonder Woman Had a Disability?

Wonder Woman appeared on my radar last year when the U.S. Post Office issued Wonder Woman stamps tracing her seventy-five year history.  Comics weren’t available in alternate formats and films and television programs weren’t audio-described when I was young, so I didn’t grow up with this icon.  Now with the buzz about the new movie, directed by a woman, I’ve started thinking what if Wonder Woman had a disability?

Wonder Woman interests me because she goes beyond just being a kickass super hero to represent female empowerment, work with other women to make the world better, face weaknesses, learn from experience and make her mark in a sometimes hostile world. She has empathy and is a pacifist. She’s not afraid to show her femininity.  I nominate these real women who have disabilities for the Spirit of Wonder Woman prize, if there is such a thing:

  • Tammy Duckworth: Iraq war veteran, double amputee, first disabled woman to be elected to the U.S. House of Representatives, currently junior Senator from Illinois “And still she persisted” comes to mind when describing this fighter for Americans of all incomes, disabilities, etc.
  • Alice Wong: founder of Disability Visibility Project, a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture created in 2014. She Facebooks and Tweets more great disability-related articles per day than I can keep up with! She’s also active in the #cripthevote movement to fire up disabled people to get politically active on issues important to them. She has spinal muscular atrophy and appeared at a White House reception by a telesensory robot.
  • Joni Eareckson Tada: Fifty years in a wheelchair have led Joni to share her strength encouragement and Christian wisdom through a myriad of books, radio programs, daily emails, etc. The organization she founded, Joni and Friends, is all about ministries with people with disabilities worldwide. Ministries range from family retreats to providing wheelchairs in third world venues to training church leaders on inclusive practices.
  • Patty Overland, Judith Smith, and Laura Rifkin are the founders of Wry Crips, a theatre company, to give voice to under-represented women with disabilities. In their current play, “Iretonia, a Sci-Fi Fantasy”, each actress develops her own part. The actors include a woman who is blind, two who use power wheelchairs, one who uses a scooter, a woman who lost a leg to childhood illness and uses crutches, and me, a stroke survivor.

For those of you who say, I’m Not Wonder Woman, Sheila Walsh has written a book to help you find and celebrate the wonderful woman you are!


Filed under: Aging Tagged: #cripthevote, a Sci-Fi Fantasy, Alice Wong, Disability Visability Project, Iretonia, Joni Eareckson Tada, Judith Smith, Laura Rifkin, Patty Overland, Tammy Duckworth, Wonder Woman, Wry Crips

Fifty Years and Growing

Fifty years have sped by, haven’t they? I won’t be at the reunion to catch up, but wanted to share a few reflections and many thanks with classmates and others reflecting on reunions.

When we were in school, students with disabilities were just starting to be integrated (as we called it then) into public schools. In many ways it paralleled the situations described in Hidden Figures. As the first blind student to graduate from the Kalamazoo Public Schools, I felt the fear of failure, the need to break barriers, the pressures of being a role model, and the dual minority statuses of being both blind and a woman. High school teachers gave me role models of people who bloomed where they were planted. They cared about their students and in most cases tried to accommodate my learning differences long before there were laws requiring it or courses to teach them how to do it. Fellow students gave me friendship, help when requested and relatively little bullying. I was lucky enough to find my niches, like chess club and honors classes. I was a nerd before the word was invented.

I went off to Michigan State, scared stiff about being able to make it. My dream of being a physicist morphed into being a clinical psychologist. Those skills of finding friends and a niche and giving my work 110% effort honed in high school carried me through a rewarding career. I worked at four universities as a faculty member, administrator and psychologist. In retirement, I’ve focused on giving back to the community by serving on boards, guest lecturing, writing three books and advocating on disability issues. Partly because I didn’t have children to raise and educate, I’ve been able to start some philanthropic projects including a statue in honor of guide and service dogs, a pet food program to take pet food and supplies to elderly and disabled in the community, some awards for children’s books and good journalism about disability issues and a fund called Access Eau Claire to help local non-profits meet access needs of their participants. In retirement I’ve gone back to playing some bridge, taken up Trivia Crack with a vengeance, joined four book clubs and become more active in my parish. I love having the time to connect with people over a cup of tea or a Facebook post.

Living with blindness and starting in middle age with fibromyalgia has been challenging, but also rewarding in many ways. I wrote my most recent book Occupying Aging: Delights, Disabilities and Daily Life to share tricks of the trade with the 50% of people over sixty-five who will develop disabilities. Among other things, I’ve learned much about interdependence—both giving and taking help. I’ve come to have pride in and gratitude for the full life I’ve had, disabilities included. I’ve learned to notice the positive, and find the humor in some of the tough interactions around my disabilities. Patience with myself and others as we try to be humane with each other is still a work in progress for me.

To have a little fun with the Billboard Top 100 songs for 1967, in closing, I send out “To Sir with Love” to our teachers. I’ve got to “Tell It Like It Is”, I’ve got “Respect” for each of you. We each went “Up, Up and Away” in our own way. I hope each of you can say “My Cup Runneth Over” as I can. “I Can See for Miles” and I see each of you “Groovin’” into the next part of life. I send all my best wishes to you.

I’d love to hear your “Reflections” on your fifty years!

schneiks@uwec.edu


Filed under: Aging Tagged: 1967, High School, Reunion

Happy Global Accessibility Awareness Day May 18, 2017

As Lainey Feingold pointed out in her post “Today is the 6th annual Global Accessibility Awareness Day (GAAD). It’s a day to recognize that everyone uses technology — including those of us who can’t see a screen, hear a video, or hold a mouse. Accessibility means we can ALL participate fully in the digital world no matter how we use our computers, our iPhones, and the other technologies we all increasingly rely on. GAAD is a day to honor the tens of thousands of people across the globe working to make technology available to everyone.”

I celebrated early this week by Facetiming with three groups of students from the Florida School for the Blind. They were attentive, involved and asked good questions. One of my favorites was a ten year-old who asked: “Before electronics was there anything you could do for fun?” I reassured him there indeed was; reading books, listening to birds, playing cards and Scrabble, etc. But I also agreed there were lots more fun time wasters now with iPhones, etc. I just happened to mention Trivia Crack and there was a roar of approval from these tech savvy blind kids.

Later in the week when I was awakened at 1:00 AM by an owl making a racket for about twenty minutes I used the bird identification app on my iPhone to figure out it was probably a Barred Owl. I don’t know what it was so excited about, but at least I know who was excited.

On the actual day I’ll read and respond to a hundred emails, scroll through several hundred Facebook posts, skim eight newspapers, and check my Twitter feed a couple times. Then I’ll lie in bed and download the next book for one of my book clubs March by Geraldine Brooks and dive into it—all thanks to tech access.

Celebrate with me by Facebooking a picture that you describe or send a nasty-gram to a website that makes you do a CAPTCHA!


Filed under: Aging Tagged: accessibility, blindness, CAPTCHA, Florida School for the Blind, GAAD, Global Accessibility Awareness Day, Trivia Crack

The Many Faces of Privilege

This week’s passage by the U.S. House of Representatives of an Affordable Health Care Act that imperils the health and wellbeing of millions of Americans discouraged me greatly. “How can they do that?” I along with many other disability advocates asked. Do they really think nobody will die? Do they really think people with disabilities being forced back into institutions is okay? Don’t they have friends or family members who will lose access to health care?

I wish more decision-makers would consider their privileges before formulating legislation like the AHCA. For example, “The Invisible Backpack of Able-Bodied Privilege Checklist” https://exposingableism.wordpress.com/2009/10/12/the-invisible-backpack-of-able-bodied-privilege-checklist/ by Melissa Graham published on October 12, 2009 is a place to start. There are a couple of these lists online, but I like hers the best. Here are just three of her twenty-one points:

  1. I can, if I wish, arrange to attend social events without worrying if they are accessible to me.
  2. If I am in the company of people that make me uncomfortable, I can easily choose to move elsewhere.
  3. I can easily find housing that is accessible to me, with no barriers to my mobility.

As a blind person, I’d point out slightly different points of privilege that the sighted have. For example, sighted people can glance in a mirror and be reasonably sure they’re not walking out of the house with a spot on their shirt and sighted people can read the comics by themselves. But who can make our representatives think about the privileged positions they are in as mostly able-bodied, well off consumers with choices in health care and other arenas of life?

Attempts to make our disabled realities visible like the Twitter campaign #IAmAPreExistingCondition and the Live On campaign deserve highlighting. The Disability Rights Center and Not Dead Yet have started a “Live On” campaign www.liveon.net to highlight the full lives people with various disabilities can have. I hope five years from now that the options for full lives will still be there for poor people with major disabilities.

I am aware I as a middle class woman in the 21st century in the richest country in the world also have many privileges. I have the basics like food, water, shelter, health care and safety covered. It makes me grateful and anxious to do what I can to make sure all Americans have them. So I lobby on and try not to sink in to despair.

Right on cue comes World Laughter Day on the first Sunday in May. According to Wikipedia, “The first celebration was on January 10, 1998, in Mumbai, India and was arranged by Dr. Madan Kataria, founder of the worldwide Laughter Yoga movement. Laughter is a positive and powerful emotion that has all the ingredients required for individuals to change themselves and to change the world in a peaceful and positive way.” My best laugh for the week occurred as I was standing in the backyard trying to get my guide dog to focus on answering the call of nature before we needed to go to a long meeting. The teenage boy next door was reluctantly practicing his trumpet. The guide dog circled and ultimately dumped to the tune of “When the Saints Go Marching In”. March on!

If that anecdote didn’t make you smile, go to your library and request this new book The Totally Unscientific Study of the Search for Human Happiness by Paula Poundstone.


Filed under: Aging Tagged: #IAmAPreExistingCondition, Affordable Health Care Act, Invisible Backpack of Able-Bodied Privilege, LiveOn, Paula Poundstone, World Laughter Day

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