How Do I Get There From Here? Planning for Retirement When the Old Rules No Longer Apply by George H. Schofield, Ph.D. talks about three overlapping stages of growth between fifty and old age. I think I’m entering the third one: new simplicity.  I’m becoming impatient with some volunteer commitments and am moving away from them as quickly as I can decently do so. I’m focusing more on how I can mentor younger people and do less myself. I want to take better care of myself; more exercise and de-cluttering come to mind.

Mentoring has involved going to meetings and making facilitative comments to help the chair keep the meeting on track. It also involves providing lunches for people who are working so they can come and bitch and strategize. I’ve said “no” to chairing projects so I can say “yes” to supporting younger people chairing. And then there’s the celebrating when a younger person has finished a project.

This week I had the opportunity to tell a young woman doing a project on the Schneider Family Book Awards about their history.  It felt odd to clearly be a historical figure—The Founder.  Founding something for me involved stepping up to do something even though I hadn’t a clue about how to do it and recruiting people to help me who had the right expertise.

The internal struggle for me is about am I being selfish?  A wise friend of mine in his eighties says it’s a balancing act between serving others and taking care of oneself and that the balance changes over the years.

As the Bob Dylan song says:

“The slow one now will later be fast

As the present now will later be past

The order is rapidly fadin’.

And the first one now will later be last

For the times they are a-changin’.”

My priorities seem to be changing toward putting more energy into fewer tasks, mentoring and a new balance of self-care and other-care.  In case any of this rings a bell with you, I’m reading Finding Our Way Again by Brian Mclaren and finding it helpful.  Onward!

With the health care situation in flux and Medicaid cuts looming, it seemed like a good year to do something public to celebrate the ADA while we still have it.  I approached some disability advocates in the community, the Center for Independent Living and a local health care advocacy group and they agreed.  My vision was for a public event where we handed out lemonade and chips, had booths with info about the Center for Independent living and the Aging and Disability Resource Center and displayed signs about “Don’t Cap or Cut Medicaid” and “ADA Matters”.

To make this happen in ten days, each of us took on several tasks.  I sought permissions from the police and the health department, made media contacts, recruited folks from the blind and Deaf communities and wrote a pep talk. One big learning from all of this was that things are more complex than you’d ever think. For example, I didn’t ask the Parks and Recreation Department if we could use the grassy plot near the farmers’ market. I blithely assumed it was public land and the police said that was okay if you don’t block motorists’ vision or sidewalks.  Or when it came to deciding to have the event or cancel because of likelihood of thunderstorms, I hadn’t even thought about power wheelchairs not liking to be out in thunderstorms.

Another learning for me is that compromising is good and leads to a better event in the long run. One gal wanted to bring a bubble machine. Bubbles don’t do much for blind people, so I scoffed a bit and figured out I could bring bells for blind folks to balance the bubbles. It turned out the bubbles attracted kids, which attracted their parents and great fun was had with both bubbles and bells.

Even though we weren’t allowed to hand out anything because we ended up escaping from the rain under the roof of the farmers’ market, the event was great. Lots of people with and without disabilities helped and many in-depth conversations about disability issues were held. Even the local newspaper story was respectful and got the facts right. Here’s my speech that somehow seemed to fit the tone of the event:

 

Happy Americans with Disabilities Act Day! Thanks for showing up to help our community celebrate the ADA and the Medicaid program.  Medicaid helps low income Americans of all ages get the services they need to live out the promise of the ADA for access.  My hopes for this event are that people learn about each other’s worlds. But that will take the bravery of asking other people how the ADA or Medicaid made their lives better and the bravery to tell pieces of your story to strangers not just throw out political sound bites.

The disability community has been the last group to achieve our civil rights with laws like the ADA in 1990 and the Help America Vote Act in 2002.

The disability community has some values I’d like to highlight today: resilience and a balance of independence and interdependence.  We feel the fear but do it anyway as we encounter attitudinal, architectural and communication barriers. We are problem-solvers and hard workers, just to get ready to get out the door sometimes. We’ve learned the truth of the Hopi Katchina Tehabi story “You see for me, I’ll walk for you”.  We’ve learned to ask for what we need and to give what we can. For example today I’ve asked Jeff to walk around with me being my eyes about who’s out there so I can greet them. I hope to learn some things about organizing from him too.  But I’ll also be educating him about the world of people with disabilities. So it’s a two-way street with the helping today. Both “please help” and “may I help?” are useful phrases for everybody.

As able, find a partner you don’t know and do the work of holding signs, conversing with people, handing out information or passing out snacks. Mix and mingle. Learn and grow and by all means have fun! Happy ADA Day!

This month the We All Love our Pets program turned thirteen. A few of our human participants and several of our animals have died over the years. This month one human, a cat and a parakeet from the program died. In the human’s obituary it said:

“Her most devoted friend, companion and longtime roommate was Ringo her tabby cat and often Garfield impersonator.” The animals we take food and cat litter to are beloved family members of the people we serve. So are our volunteers who get many thank yous, occasional home-baked goodies and the satisfaction of knowing people and pets are better off for the volunteering they do.”

I read Take this bread by Sarah Miles for one of my book clubs. I was so impressed I read two of her other books Jesus Freak and City of God. Sarah was a war correspondent and an atheist.  She moved to San Francisco. One day, on a whim, she walked into an Episcopal church. She became a Christian and organized food pantries inside the church and around the city. Her zeal for feeding the hungry and finding God in all things made me reflect on the parallels with my experiences in the thirteen years I’ve spent doing the We All Love our Pets program.

I’ve learned three things for sure from this program:

  • The poor have as much to give as the rich. It may be time and energy rather than money, but it’s giving. People tell me about taking care of their grandchildren and others’ animals while their neighbor is in the hospital. Pet food recipients who get most of their food from the food pantry bake and share goodies with us volunteers.
  • God is everywhere: in the love between animals and humans, in the shared joy of hearing about a pet’s antics and in the sorrow of pet loss and human illness and death. I get to witness and am sometimes asked to say prayers aloud for healing and hope.
  • God challenges me to grow through this program. Sometimes I don’t “feel” like doing the calling about needs or the delivering of the food and litter. God tells me to do it anyway and maybe in the doing of it, I’ll get over myself.

Why do I have a harder time loving the rich than the poor? I get angry when I encounter people who have a lot of money and are not generous. It’s hard to dig deep and realize they may be hanging on to what they have because they feel “poor” in some way.  Deliver me from self-righteously judging them and open my heart to see the good in them too.

So this Litter Lady keeps delivering pet food and cat litter and learning from the people she serves!

 

 

 

 

This week I was out fundraising and Friend-raising for Wisconsin Public Radio as part of my duties for their fundraising arm, Wisconsin Public Radio Association. I talked with donors about their love of WPR and how they could show it more love to keep it strong for the next hundred years. It made me think about my love affairs with radio.

I love public radio, both National Public Radio and Wisconsin Public Radio. But I’m not faithful; I also enjoy the British Broadcasting Company (BBC) as well. I became an adult as National Public Radio started up. I associate their news programs with balanced and thoughtful reporting. The jokes about “All Things Considered” being a little too long on the “all” never bothered me. The program about money, “Marketplace” “that they air is so well done I got interested in a subject that I didn’t think much about before—other than did I have enough!

I’ve moved around enough in my adulthood to have lived where public radio was good, Ames, IA and where public radio was almost absent, Scranton, PA. Wisconsin’s public radio has been on air for 100 years and is considered to be one of the best state-wide systems. Their program “To the Best of our Knowledge” is one of the most creative programs talking about big ideas I know. “Chapter a Day” has interested me in reading many books over the years. The readers of the books are so good and are a lovely change from the computer voice of most of my reading.

Then there’s BBC, broadcast on many public radio networks late at night. BBC has been criticized for being a tool of the British government, but it seems to cover both sides of British issues to this outsider. Also, it has more world news than National Public Radio, I think. It seems to me it is statelier or has more gravitas with its programs like “World Book Club”, “Thought for the Day” and “Prayer for the Day”.

The great news is that nowadays, we can have it all because of streaming online and podcasts. But like all good things, it costs money. Less and less tax dollars support public broadcasting. In Wisconsin, about 45% of the budget for public radio is individual contributions. Since this is not a pledge drive, I’ll quit there.

Enjoy good listening!

 

 

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 telepresence 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 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!

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

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!

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.

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.

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!