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

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

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

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

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

 

 

Advertisements

Two days before World Braille Day (Louis Braille’s birthday) and still within the twelve days of Christmas, my friend Penne presented me with a gift that left me speechless.

Penne is a crafter and used to teach blind children. When she said over a year ago that she wanted to make me a feelable barn quilt, I knew she’d come up with something beautiful to both sighted and blind people.

A barn quilt is typically a painted two- dimensional wooden square to replicate quilt blocks. The quilt block used in this barn quilt is a version of the Ohio Star.

She took a lot of pictures of Luna so I knew her handsome profile would be in it somehow. She assembled a team of relatives and a friend with sign-making skills, made plans, fueled their work with Wisconsin cheese and waited for the production to happen.

The three-dimensional, hard plastic sign says “Welcome” “Kathie” and “Luna” in both raised and Braille letters. The sculpted, painted acrylic insert that is a representation of Luna’s head even has real whiskers added. Luna’s expression is alert and focused. The 16-inch piece will hang in my computer room where it can be seen as people enter the house from the back door.

Beauty is defined as “the quality or aggregate of qualities in a person or thing that gives pleasure to the senses or pleasurably exalts the mind or spirit.” This gift is beautiful in so many ways, tactual beauty, visual beauty, and the beauty of the spirits of the people who dreamed it up and crafted it. I will always treasure this beautiful gift. Thank you.Barn Quilt 3.jpg

 

Recently I got to talk to five groups of high school students, some of whom were receiving special education services about adulting with a disability. I first asked them what makes an adult? Most thought it was more than an age number but included responsibilities like paying taxes.

I then went on to talk about the realities of living with a disability as I see them:

A: You have to ask/advocate for what you need.

B: There’s a bubble around you, particularly if it’s a visible disability. Reach through it!

C: It costs more in time, energy and money to have a disability.

D: You will face discrimination because of your disability.

E: A disability is an everyday part of your life. Keep your reserves up.

F: Find the pearls in the disability experience.

I then gave them my rules for Adulting with a disability

  1. Life tasks take longer—plan ahead!
  2. Try new things.
  3. You don’t get everything you want, but you do get to make choices and clean up messes.
  4. Mistakes are good teachers.
  5. Show up when and where you said you would.
  6. You have to train allies/helpers.
  7. When facing a conflict, work for a win/win.
  8. Team work rules!
  9. Play is important, but after your work is done and within your budget.
  10. What kind of a person do you want to be?
  11. Believe in yourself and have high expectations for yourself.
  12. Have three “G”’s in your attitude: gracious, grateful and giving.
  13. Asking for help is a sign of strength.
  14. Look for the pearls.

The questions were thought-provoking including what’s the best thing you’ve ever done. I was practically speechless by the time I left the school. How do teachers talk all day and still have a voice in the evening? Of course Luna was ready to do it again the next day because she got petted by five groups of wonderful young people.

When I was out talking to journalism classes at Arizona State this week, before presenting the NCDJ awards, I talked about finding stories and/or finding disability angles for stories. For example, I’ve seen no stories in mainstream news outlets about the disability angle on what a bad thing it would be to get rid of net neutrality. Those of us who can’t shop independently at a bookstore, for example, can shop online if the websites are screen reader friendly. Deaf people who rely on video relay services online need the Internet to be just as fast for this as for streaming of content from some big telecom company.

The more I thought about it, the more determined I became to see the disability angle covered. So I contacted libraries and other advocates for net neutrality and some media outlets in my state. So far all I’ve scored is an article in an online local paper http://cvpost.org/net-neutrality-principle-serves-libraries-disabled-population-democracy/ There’s about ten more days to fight the roll back—I’m not done yet!

On another visibility front, Just the Right Book Podcast’s independent authors poll is now live on their website at bookpodcast.com/poll

With the millions of books published every year, how can anyone learn what’s good? Unless one has the name recognition of John Grisham or the publicity budget of Bill Gates, one must rely on book reviewers and friends telling friends.

Here’s where you come in! If before December 15, you can give my Occupying Aging: Delights, Disabilities and Daily Life a vote, I’d appreciate it. If it wins, it’ll be reviewed by Just the Right Book podcast and more people might read it. Even if it doesn’t win, you now know about a good book review podcast and they’ve done independent writers a service by featuring one book not published by a major publisher. go to the website www.bookpodcast.com/poll to vote.

On a lighter note, I’ve volunteered to write letters from Santa in Braille for our public library and this is duly noted in their publicity. It’s stated as “letters in English, Braille or Spanish are accepted” implying Braille is a language, but at least it’s there.

Three cheers for those giving a boost to disability issues and stories and to those who listen!

My biggest learnings were about how hard it is to transition a program you run to others who may or may not want to do it and definitely will do it differently.  The transition of the pet food program described below in a column for the local paper was in the works for a year. Sometime you may need to hand off some of your projects that you care too much about to just say “bye” when you’re done. Plan way ahead, be willing to compromise and celebrate if it happens are my best nuggets of advice.

 

After thirteen years of monthly deliveries, the We All Love Our Pets program will end in December. It has provided monthly deliveries to elderly and disabled people with low incomes, under the auspices of the Eau Claire County Humane Association. Over the years the program has grown from five households to thirty-five. Tons of cat litter, cat and dog food and food for a few parakeets and a guinea pig have been delivered. Our team of volunteers has been like the Postal Service, through heat, cold, snow and ice, and car trouble the deliveries have gone on. We’ve mourned the passing of a few of our human customers and some of their pets, but have also rejoiced at the new pets that have entered the life of an elderly or disabled individual.

Our sponsor, the Humane Association of Eau Claire County is initiating a new program where individuals can stop by the shelter and pick up the food and litter they need. This will meet the needs of many of our current customers and others not currently on our program with much less need for volunteers. My volunteers and I are getting older and needed to transition the program to something different before anybody broke a leg and everything fell apart. I’ll miss my volunteers, the customers and their pets.

It’s hard to put into words what I’ve learned over the years from the volunteers, customers and animals, but a few things stand out:

  • One can be happy without being well off financially. A homeless man who dearly loved his dog and rejoiced in their adventures together exemplified this.
  • One can be generous, even if one doesn’t have much. Most of my customers helped out in the community somehow, watching their grandkids, volunteering at Community Table and even handing us volunteers a home-baked goody from time to time.
  • People are resourceful and resilient. Volunteers borrow a truck when theirs breaks down. Customers take care of each other’s animals when someone has to be in the hospital.
  • Volunteers who show up, do the job and have fun doing it are a joy! We’ve laughed and cried with our customers, prayed for them when asked and celebrated a marriage, a move, a new pet and milestone birthdays.

I hope that as the We All Love our Pets program ends and the Community Pet Food Pantry program begins our donors and the public in general celebrate with us the fact that in Eau Claire we do love our own pets, as well as the pets of those who are elderly, disabled and low income.

Blind people like to game too, but most mainstream games like Tetris and words with friends are inaccessible. Four years ago a developer Marty Schultz started developing Blindfold Games and now has over 80 games at the Apple store. www.blindfoldgames.org 8,000 copies of Blindfold Bowling have been downloaded, for example.

This week he was told by the Apple store he couldn’t market these games anymore but must crunch them down into a few apps. This would take a lot of work for very little profit. Blind people would lose the fun of gaming like their sighted peers enjoy and teachers of the blind would lose a fun way to teach their students how to use their iPads and iPhones.

As the developer’s blog made the blindness community aware of this horrible situation, advocacy efforts sprouted like mushrooms. Many posted their dismay on social media. An unknown number emailed or called Apple’s accessibility line. I contacted several reporters on the tech beat hoping to get the story out to the sighted world, but none responded.

But somewhere, somehow, something got to Apple and they changed their minds! In addition to celebrating the win by playing a few rounds of blindfold bowling, I’m wondering how to get Apple to give this developer an award. There are many more lucrative venues he could be marketing to, but I think he should be publicly thanked for making sure blind people can enjoy the fun of gaming too. If you have ideas, please let me know.

If you’re interested in knowing the answer to that question, you’ve taken step one in getting rid of the ableism we all have grown up with. Ableism, like racism or sexism, means considering people inferior because they belong to a particular group, in this case people with disabilities. The judgments of inferiority are based on stereotypes and can limit an individual’s opportunities. When it’s widespread and institutionalized it can lead to eugenics, euthanasia and selective abortion.

 

Some examples might include:

  • Commenting to a friend with a disability “I don’t see you as disabled”
  • Not providing sex education materials in braille because blind children wouldn’t need that
  • Not routinely providing dolls with disabilities in daycare centers
  • Not inviting a member of a coffee group to have coffee anymore after they’ve had an accident and have a brain injury
  • Not bringing a family member with dementia to church because “they won’t get anything out of it”.
  • Lack of portrayal on television and on screen of disabled roles by actors with disabilities
  • Media portrayals of people with disabilities as superhuman/inspirational, as objects of charity or monstrous (particularly around Halloween)

 

Long-term consequences of ableism include high unemployment and poverty rates for people with disabilities. Society also loses out on individuals’ gifts because they’ve been shunted aside on account of their disabilities. Ableism also leaves people without disabilities with a lot of fear about what if that happens to me?

The first thing to do about ableism is look for it in yourself and others. Congratulate yourself when you say something ableist and a friend with a disability challenges you. Then work to rephrase it. “I’ll pray that God gives you back your sight” could be rephrased as: “May I pray for you in some way?” “I’ll help you” can be rephrased as “May I help you?”

It’s always more fun catching and correcting others’ comments, but saying “sorry” and working to rephrase one’s own is more productive. After all, each of us spends 24 hours a day with ourself, so self-improvement can be worked on any time.

At my age I’m having more and more friends encountering new disabilities or watching their spouses face a new disability. Sure it happens to half the people over sixty-five, but we never figure we’ll be in That Half! That statistic about HALF is why I wrote Occupying Aging, but not everyone has the inclination to read a book early on in the disability journey. So here’s a free sample of a little advice email for the person with the new disability and for the spouse. First I sympathize/empathize and then ask lots of questions about their diagnosis, treatment, etc. Then on to the advice labeled as free and worth what you pay for it. I’ve made these emails generic enough that even if I don’t know you, it might resonate with your situation or that of a friend.

 

For the newly diagnosed person:

You have three choices:

  • “Cheat” as soon as you can and do the same things you did before disability and see if it turns out differently
  • Walk away and find a different opportunity to give
  • Consider how you can modify your volunteer role

 

If you choose this last one, your excellent problem-solving skills will come up with solutions I’m sure. They won’t be as quick or easy as the way you used to do things, but they’ll work. You’re so good at training and supervising, I wonder if you’ve considered finding an aide to do your lifting.

When you start asking for help and/or accepting it, keep the seesaw in mind. At the end of the day have you given as much as you’ve gotten?  You’re so used to being the heavy end of the seesaw giving and giving, it’s time to work on your skills on the other end.  I know it isn’t nearly as fun, but it does trim down one’s pride a bit, which is a good thing for me anyway.

 

 

For the spouse of the newly disabled person:

If your spouse is like most of us she’ll “be good” for a while, then “cheat” as you fear and overdo it.  Unfortunately some of us are slow learners when it comes to accepting limitations. But she’s bright and will eventually start figuring ways around the limitations (like hiring an aide to be by her side for an hour a day or such) to do the parts of the job she should no longer do. In some ways your job is harder, offering help, letting her learn to ask and sympathizing when she feels bad after overreaching.  You’ll want to say “I told you…” but if you can content yourself with “I’m so sorry” you’ll live longer and have less futile fights!

A friend who is still getting her sea legs in retirement asked for sage advice. I ruminated and came up with the following:

Richard Johnson has done a lot of good work in the area of retirement. His Retirement Success Factors are:

Work Reorientation, Attitude Toward Retirement, Directedness, Health Perception, Financial Security, Current Life Satisfaction, Projected Life Satisfaction, Life Meaning, Leisure Interests, Adaptability, Life Stage Satisfaction, Dependents, Family and Relationship Issues, Perception of Age, and Replacement of Work Function. You might enjoy doing one of his online programs.

Having been retired 13 years, I’m finding myself fine-tuning my involvements in the community. For the first dozen years I said “yes” to too much, I think. All good stuff, but the work/life balance was skewed toward the work end of things too much. I’m starting to say “no” to another term on boards where I’ve contributed a lot. It’s time for others to have a swing at it. I’m transitioning the pet food program to the Shelter which will do it differently with less personal involvement. It’s hard to let go of things, especially because I haven’t found replacement causes to soak up all the time. Something is telling me it’s time to concentrate more on recreation, prayer, spiritual reading and rest. I’ve declared this year as a Sabbatical as in prioritizing some Sabbath for myself. I don’t exactly know what that will look like, but should be interesting to find out.

I have a hunch leisure activities get short shrift for many of us leading to burn-out (which is possible in retirement)! After so many years of doing for others, it takes thought to figure out how to just be and enjoy the moment for part of each day.

That’s my philosophizing for the moment. Back to attending a boring meeting by phone, luckily with my line muted so I can multi-task.

Enjoy fall, crunching leaves, apple crisp and the sounds of geese getting ready to go south!

In addition to all the great books about retirement, check out the podcasts at www.retireerebels.com for great info.

As often happens, life clobbers me several times in a short period with something I’m supposed to do or think about. This week it’s how we’re all (including me) multi-dimensional.

For one of my book clubs we’re reading Settle for More by Megyn Kelly. Her memoir chronicles her evolution from a hard charging lawyer to a hard charging journalist and then to a multi-dimensional media personality, wife and mother. She glories in all of these roles and believes women don’t have to settle for less than being a success in career, relationship and parenthood arenas, or whatever arenas they want to be in.

At another book club we were discussing a novel An Available Man by Wolitzer with lots of intimate relationships mentioned. The gals in that group did a lot of personal sharing. I didn’t and when one gal wanted to know who had been married before she pointedly did not ask me. She assumed, I guess, that since I was blind, that dimension of life wasn’t open to me. I didn’t correct her partly out of anger and partly out of not feeling comfortable sharing as much as some were. The group knows me as a successful retired professional and disability activist, but not a divorced person.

Lately I’ve read several blog posts by people with disabilities showing vulnerability. One wrote about what if your guide dog looks to you for visual feedback about his/her performance and you don’t see the checking in? Another discussion on Facebook concerned the next version of the iPhone, X, which has a face recognition unlocking feature. What will blind people with artificial eyes do? A blogger wrote about her situation as a person who has multiple sclerosis and needs a good bit of personal care, “should” she become a parent even though she would need more help? Single dimensional Disabled Person who overcomes All Obstacles is giving way to multi-dimensional person with strengths but also doubts and vulnerabilities.

I’m on the cusp of deciding to go talk to my priest about our church’s need, in my opinion, to become more welcoming of people with disabilities. But this will show my vulnerability way more than I have when I read Scripture, serve on Parish Council and help with various ministries.

The first nudge to go talk came from a non-violence workshop that stressed go talk with someone you disagree with and ask them to tell you where they’re coming from before confronting them with your truth. The second nudge came a couple days later from an Occupy Democrats Facebook post of a Christian song, “No Longer a Slave to Fear, I Am a Child of God.”

Do I show the vulnerable, want to be welcomed part of me? Stay tuned and feel free to ask yourself the same question. It’s not all about me!