This week there was another school shooting with seventeen killed. The Congress recessed for a Presidents Day holiday without doing anything about gun control or for Dreamers. But somehow they managed to find the time and the will to pass HR 620 the Americans with Disabilities Education and Reform Act, which guts the ADA. What are they thinking!

Although it is benignly named the ADA Education and Reform Act, this bill removes the consequences for businesses with architectural barriers that violate the ADA until an individual with a disability is denied access and provides a specific legal notice describing the denial of access and nature of the barrier.  The individual with a disability must then wait up to six months for the business to make “substantial progress” in removing the barrier. Substantial progress is not defined. Half a ramp, Braille numbers on half the elevator panel? Wheelchair access to the men’s room but not the women’s?

Additionally, the bill requires the Department of Justice to provide education and guidance to businesses about ADA requirements. If lawmakers took a look (or listen) to www.ada.gov they’d find that is already being done. The bill gained traction because of some highly publicized drive-by suing of noncompliant businesses in a few states. Instead of dealing through their state bar associations with these unscrupulous lawyers, this bill punishes the millions of us who need access on a daily basis. What other group in the U.S. would we tell to wait six months (at least) before going to a movie, going to the bathroom or using a website? Is access a right or “nice” if I am kind and want   to provide it? The ADA said twenty-eight years ago it’s a right (with some limits like all rights). HR 620 says differently.

This week also was the start of Lent when Christians are supposed to pray, fast and engage in alms giving to help empty the garbage in our lives and prepare to live as Easter people. I’m praying for all of us to realize that disabled people, Dreamers and school kids are all my neighbors and deserve basic human rights. I’m trying to fast from casting aspersions on the motives of people in Congress that we elected to work for the common good. It would be so much easier to give up chocolate! My alms giving will be working to defeat the Senate version of HR 620 and support groups like Adapt that give this issue visibility.

Please walk or roll beside me!

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The New Year is well underway and cabin fever has set in, at least at this cabin! My plan for fighting cabin fever involves trying some new things. This week I went to a free cooking class at an upscale grocery store. The teacher demonstrated making grain bowls. You take a grain like quinoa and chop up all sorts of vegetables to look pretty on top of it and then add a vinegar and oil dressing. I don’t think I needed a class, but the eating was good and it was a pleasant way to spend a cold, dark February evening. I did learn that quinoa is a complete protein.

I attended a readers’ theater program at the library. I was sitting with a friend in the front row. In their final piece, the readers danced around pretending to be a girls ball team warming up by doing a little cheer: “Woof, woof, bowwow. We’re the best”. They danced about a foot from Luna’s nose woofing wildly. She didn’t move a muscle! I just wish I knew what she was thinking about crazy humans.

In one of my book clubs we’re reading a book of the Bible, Isaiah and we’re each reading a different commentary on it. I read one lightweight commentary, Wikipedia and a serious commentary that tried to decide whether the Suffering Servant had a disability. The little bits of Isaiah that show up in Handel’s Messiah or are often quoted like “You are the potter, we are the clay” speak to me. But the rest of the 66 chapters could be condensed in my opinion.

After my advocacy effort of writing an opinion piece for the Chippewa Valley Post about how Delta Airline’s new service and emotional support dog regulations get it wrong, I did an interview for television on the same point. They used two sentences of a twenty minute interview and my sound bite did not sound brilliant. Now I know how those politicians feel!

I’ve also volunteered to be an ambassador for Chippewa Valley Votes, as they try to register more people. Then I heard that Eau Claire will have the world series of beep ball (baseball for the blind) this summer. So I called up Visit Eau Claire and volunteered to be their consultant on how to make their arrangements for the visitors blind-friendly.

Luna turned eight. The highlight of the week was a birthday party for her, hosted by her 14 year-old predecessor who has a big fenced backyard. Luna invited a five year-old dog who will play chase with her. So the two younger dogs ran around inside and outside while the hostess dog sat and watched and looked for scraps from the humans’ brunch.

Trying new things and reading a few thrillers mostly chased away my winter blahs. Only 6 more weeks of winter?

 

 

I’ve traveled independently all over the United States for the last forty-five years with Seeing Eye dogs. Delta Airlines recently announced new policies for service and emotional support dogs which will make that travel more difficult and won’t solve the problem of fake and poorly behaved service and emotional support dogs that they were meant to address.

I’ve flown with my Seeing Eye dogs to family vacations, job interviews, funerals and professional meetings. I’ve ridden on four-seater planes and jumbo jets. My dogs and I have met mostly wonderful fellow passengers and airline staff. We’ve encountered a variety of other service and emotional support/comfort dogs over the years, most of whom were well behaved and just trying to get where they were going as we were.

In the last few years as more airlines have allowed “emotional support animals” as well as service dogs, there have been more problems with poorly behaved animals and fake service dogs brought into the cabin by someone who just doesn’t want to pay for their dog to travel in the cabin. I’ve encountered a few of these dogs who wanted to attack my Seeing Eye dog as I passed them going to my seat or barked piteously throughout takeoff and landing, clearly scared out of their minds by the plane noises and air pressure changes. The Seeing Eye and other guide and service dog training schools provide a lot of training to us dog handlers about dealing with our dogs in crowded stressful situations like flying is these days. Emotional support dogs and their handlers get no such training and support. For example when I shared a tip about try giving your dog a sliver of ice to suck on while taking off or landing to help their ears, the barking dog quieted and the owner was able to go back to getting emotional support from the animal.

Delta’s new rules, which will take effect March 1, require uploading a proof of rabies vaccination form each year two days before a flight and checking in at the Delta service counter for each flight to have the dog’s status verified. Emotional support dogs must also have a letter from a doctor saying they are needed and will behave in public. Some of the problems with this policy are:

What if I need to travel in an emergency and haven’t registered my dog’s vaccination records with Delta?

What if other airlines adopt this policy? How many do I need to register with to be safe?

What if I’m rebooked from another airline onto Delta and I haven’t registered with them?

What if I’m traveling with friends or family who want to check in online or use kiosk or curbside check in?

The Air Carrier Act and the Americans with Disabilities Act which both cover parts of my flights through the Friendly Skies already state that the service animal in the public situation must be well behaved or it can be made to leave. They also stipulate that a person with a disability can’t be discriminated against. The extra registration and having to check in at the counter each flight seem like discrimination to me. A letter from a doctor or mental health professional stating that an emotional support/comfort dog is well-behaved in public can be faked and/or written with kind intent but no thought of the actual travel situations the dog will be in.

Apparently the Department of Transportation will roll out some new regulations about “emotional support dogs” later this year for public comment. Please join me in encouraging Delta to put their regulations on hold and let the DOT meet with guide and service dog groups, as well as airlines to work out something that is fair and effective. It’s in all of our best interests to have safe travel and not to have excess burdensome and ineffective rules.

To contact Aviation Consumer Protection Division at the U.S. Department of Transportation with your thoughts, go to https://airconsumer.dot.gov/escomplaint/ConsumerForm.cfm,

Recently my Seeing Eye dog and  I were  out shopping and were accosted by a Christian who wanted to know if I knew that the End Times were coming “when the blind shall see” (Isiah). Not wishing to fight, I said “yes”. She then said “doesn’t that make you happy?” To which I answered: “Well I’m pretty happy now, I guess I’ll be happy then.” After a bit more fruitless discussion I escaped. Since I live in a small town and have served the public on some boards, she found my phone number. The next day she phoned me to see if I’d like to discuss this further. I declined firmly but politely.

I’m in an ecumenical book club that has decided to discuss Isaiah next month. When we talk about the “blind shall see” passages, I want to go beyond saying “it’s poetry, so probably a metaphoric use of blindness.” Even if one takes the literal view from the Old Testament that disabilities are blemishes, preventing temple service and requiring a charitable response from others, that’s not all. Moses, the Suffering Servant in chapters 52 and 53 of Isiah and King David to mention only three luminaries from the Old Testament had disabilities.

The equating of blind with ignorant and the automatic assumption that we need and want fixing cause great harm to those of us who are blind. It makes us into beings who always need charity and have nothing to offer in return other than gratitude.

My God doesn’t think that way. God created me and I believe (at least on good days) that I too am “wonderfully made.” This view of disability leaves me free to use my talents to love others and work for justice instead of waiting to be healed in this world or the next.

Blindness (or any disability) has its difficulties:

  • I have to ask again and again for what I need from others
  • There’s a bubble around me in public such that people hesitate to approach me
  • It costs more to buy adaptive equipment than regular gizmos.
  • Sometimes I’m discriminated against.

    I deal with the frustrations daily which consumes more energy than not being blind. But there are also the positives of being blind:

  • Humorous things happen as I interact with a sighted world.
  • I’m more aware of the interdependence of us all.
  • I know that many people are helpful most of the time.
  • I get to have an intelligent being, my guide dog, by my side as I walk through life.
  • The frustrations both from the blindness and from interacting with “spiritually blind” people make me stronger.

If you feel compelled to share your good news about the future as you understand it where the blind see, or if you want to pray for my sight to be restored, please consider doing the following first:

  • Get to know me and my world before you decide how to make it better.
  • If we’ve discussed faith and we’re at the level of knowing each other where you’d be comfortable with me praying for you, then feel free to ask if I’ll pray for you and offer to pray for me as well.
  • Then ask how you can pray for me and do the praying from my perspective of needs. I may ask for healing, for strength to fight discrimination or for patience to deal kindly with others’ responses to my disability. If I ask for something you don’t agree with, like a driverless car that’s too expensive and might malfunction and bring us all to Heaven before our time, pray for more accessible transportation options instead.

 

If you want to share your best guesses about Heaven, listen to mine as well. Maybe together we can make a little Heaven on earth where both the sighted and the blind understand that we all are wonderfully made and have gifts to share.

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!”

 

 

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.