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Happy Thanksgiving and               what’s It All About?

 

Never let it be said that this blog is afraid to tackle The Big Questions! Lately there have been several public entries in the ongoing discussion of the meaning and purpose of life and when it should end.

Brittany Maynard ended her life at age 29 because she had aggressive brain cancer and did not wish to live through the inevitable pain and debility. In October’s Atlantic Monthly, Ezekiel Emanuel wrote about “Why I Hope to Die at 75”. He picked this age (eighteen years in the future) because on average he’ll still be mentally and physically functioning at a level he deems satisfactory. He says that he’s against euthanasia and assisted suicide, but will just refuse any treatment when he reaches that age.

Both these individuals do us a great service I believe by making us think about the meaning of our lives and when is enough enough.

So does Rebecca Alexander in her memoir Not Fade Away: A Memoir of Senses Lost and Found. She’s a psychotherapist in her ‘30’s living with Usher’s Syndrome which means she’s almost blind and almost deaf nowadays. She writes about what she’s lost. But she also writes about   what she’s found in return–an exquisite sense of intimacy

With those she is closest to, a love of silence, a profound gratitude for everything

She still has, and a joy in simple pleasures that most of us forget to notice.

I hope as I suffer the losses that aging so often entails that I can look for the gains as Alexander does. Her “life is a gift so savor the gift you have been given” attitude (my words not hers) is inspiring to me. My communications with my Higher Power so often involve “thanks and I’d like…” I don’t say “I’ll quit if I don’t have health, wealth…” but I also don’t promise not to gripe.

So Happy Thanksgiving! After consuming that last sliver of pie, happy ruminating!

 

 

 

I just got back from a short trip to AZ to see the second annual Schneider Disability Issues in Journalism awards given. www.ncdj.org Luna is a great traveler, a good guide and a wonderful icebreaker. But I’m amazed; she’s also my moral teacher as well. Consider the following:

The Gospel reading today is Luke 14:25-33, which talks about hating your possessions and working out your salvation in fear and trembling. The priest talked about hating meaning not letting possessions interfere with our following Christ. Yesterday Luna and I were in the Phoenix airport waiting for our plane home. A little boy had a remote-controlled helicopter which he zoomed over to bump Luna. He then commenced to make it zoom close to her and away from her to get her attention. She was interested for a bit. Seeing Eye training did not include what to do in this situation! After a bit she got up turned around and put her back end toward the temptation and lay down. Clearly she said without words “I’m not going to let this distract me from doing my job.” After a couple minutes the child tired of bugging her and went away. If I could only do as well at turning my back on things that distract me like elections that don’t go my way!

Our priest explained that the “fear and trembling” in Luke doesn’t mean God will get you if you’re bad, but trembling in eagerness. On our journey home I dug out of my pack my two-course lunch of nuts and chips. Luna sat up and fixed her gaze on every chip on its journey from the bag to my mouth. I didn’t notice if she was trembling but she sure was eager. She did get one! Perfect behavior on a ten-hour journey needed rewarding even if the general rule is no people food. If I could devote the concentrated attention she gave to watching me to doing the Lord’s work, that would be a good thing.

Thanks for the example, Luna. I know, I know, dog is God spelled backward!

My usual response to being treated as invisible, whether because I’m blind or a senior citizen is anger. But clearly other responses are possible. Consider these books:
In Invisible by Lorena McCourtney, “feisty senior citizen Ivy Malone decides to use her newfound anonymity to catch cemetery vandals in the act. She witnesses a sinister crime and puts her investigative prowess to work,” according to a review on Bookbub.

Or in Bat Loves the Night by Nicola Davies, just published in print/braille by National Braille Press, the bat uses darkness to her advantage to hunt by echolocation.

Invisible Man by Ralph Ellison and many young adult novels share my more painful feelings about invisibility and being overlooked because of belonging to a minority group. In some ways we stick out like sore thumbs, but in other ways we’re overlooked like we’re invisible.

Invisible: A Memoir by Hugues De Montalembert is the impressionistic memoir of an artist who was blinded in a sudden act of violence, leading to his meditations on what it means to see and be seen. As he says, “Yes, close your eyes, you will see what light renders invisible.”

Invisibles: The Power of Anonymous Work in an Age of Relentless Self-Promotion by David Zweig promotes taking pride in what you do whether others notice or not.

Recently when I was not introduced as an author when all other authors in the room were introduced, I was deeply hurt and angry. As I pondered what to do, I considered the hazards of confronting the person, retaliation and/or a brush off of “Oh, I didn’t see you.” As a psychologist, I know how hard it is to look inside at hurtful behavior and I wrestled with how to say what I needed to say in a way that would invite introspection. Am I being overly sensitive?

To take a break from this quandary, I emailed Public Radio Exchange about the total inaccessibility of their wonderful Public Radio Player app to voiceover users. All voiceover can read of the opening screen is “page 1 of 4”. Imagine how hard I’m drooling! Personal invisibility is hurtful, but invisibility of a huge group of us is intolerable. I emailed the help desk but when I went on the Public Radio International website (the parent company I think) to email them, their form had a visual CAPTCHA. Now I’ll have to wait until I have a sighted reader to help me email them and will add the CAPTCHA problem to the email.

Off to Mass to get inspired. The Gospel today is from Luke “gird your loins and light your lamp”. So I’m supposed to gird my loins to deal with the hurt of invisibility and light my lamp and advocate for visibility.

I checked the meaning of “gird” on dictionary.com and it means “prepare for action”. So I pray, nap, walk in the leaves on a beautiful fall day, use NPR and PRI apps that are voiceover-friendly to catch up on news and await email back from Public Radio Player help desk. Sigh!

When my neighborhood near a university with lots of pedestrians found out we’ll probably get a roundabout, I was not pleased. It’s hard for blind people to cross whether we use canes or dogs because the traffic doesn’t stop and then surge which helps us know when to cross. So I did serious Internet research and came up with the following points. Feel free to borrow if you want to try to get your town’s traffic department to do roundabouts as well as possible. Traffic engineers love them, so I’m convinced “just say no” won’t work.

Analysis of problem: Requirements for Safe Crossing by Visually Impaired Pedestrians

The visually impaired pedestrian embarking on maneuvering a roundabout needs information about:

A. The location of cross walk which may be provided by:
• Landscaping, pedestrian barriers and other architectural features
• Standardized detectable strip across the sidewalk
• Curb ramps with returned edges aligned with crosswalk direction
• Sufficiently steep curb ramp slope to be detected underfoot
• Aligning the slope of the ramp with the crosswalk
B. The location of splitter island
• Signal the presence of a pedestrian refuge
• Detectable warnings mark the beginning and end of a safe pedestrian area
• About 60 cm of detectable warning surface is required
C. Crossing direction
• Remaining in the crosswalk
• Ultra-high contrast marking
• Raising or otherwise marking the crosswalk edges to provide a boundary
• Providing a raised guide strip at the centerline of the crosswalk
D. Safe crossing opportunities
• Likelihood of drivers giving way to pedestrians
• Crossing in front of stopped vehicle
• Stop bars and LED in-roadway warning lights
• Signals may be necessary to provide street crossing opportunities

Signals must optimize roundabout operations for both pedestrians and drivers.

Roundabouts may be unsuitable where there are large numbers of pedestrians.

The major design recommendations derived from the studies are:
• Ensure motorists recognize the approach to the roundabout.
• Avoid entries and exits with two or more lanes except for capacity requirements.
• Separate the exit and entry by a splitter (ghost) island.
• Avoid perpendicular entries or very large radii.
• Avoid very tight exit radii.
• Avoid oval shape roundabouts.

I’m often asked “Are things getting better for you because of technology, laws, etc.?” In my last blog about the wonders of iPhones which are accessible out of the box, you’d think the answer would be a resounding “yes!” Then I run into an app that is totally inaccessible like a Bible trivia game or the Jeopardy app and my “yes” changes to “sometimes”.

When our public library migrated to a new catalog, it became less accessible than before. I checked with the administrator who agreed they really “should” consider accessibility in purchase decisions, but it wasn’t done consistently. She also wasn’t optimistic that the product’s maker would respond to her comment. So far they haven’t.

In case you’re fighting a similar battle, here’s a quote from the government’s Section 508 website:

“How Section 508 Applies to Public Libraries Section 508 applies to federal departments and agencies. It does not apply to recipients of federal funds and does not regulate the private sector. However, the Technology-Related Assistance for Individuals with Disabilities Act of 1988 (Tech Act) and its successor law, the Assistive Technology Act of 1998 (AT Act), both contain provisions requiring grant recipients to comply with Section 508. Each state that receives a grant under Section 101(e) (3) of the AT Act must continue to abide by the assurances the state made in its application submitted under section 103 of the Tech Act, and must continue to comply with the Tech Act’s reporting requirements. In Section 103(d) (6) of the Tech Act, states were required to submit an assurance that the state, or any recipient of funds made available to the state, would comply with guidelines established under Section 508. Such compliance includes adhering to the standards issued and published by the U.S. Access Board. Since all 50 states and the District of Columbia, as well as Puerto Rico, the U.S. Virgin Islands, American Samoa, Guam, and the Commonwealth of the Northern Marianas Islands, are recipients of federal funds under the AT Act, Section 508 binds them all, along with recipients of federal funds passed along through these jurisdictions. Therefore, all public libraries will need to comply with Section 508’s requirements for accessibility of information technologies for both their patrons and their employees.”

When customers demand 508 compliant products, they will be made so. Clearly if the old product is more accessible than the new product, it is possible. So I’ve asked my library board to pass a resolution asking our system library to use 508 guidelines in purchasing decisions, basically asking them to please obey the law.

Another day I get an email asking Next Avenue readers to take a survey with a link to a survey invisible to a screen reader. So I email them “your survey is not section 508 compliant. Aging well, which you rightly promote, should also include access via screen readers because more people lose vision as they age and still wish to remain involved. Your audio challenge for the captcha on the feedback page is not a link so is also not usable with a screen reader. The only way I can give you feedback about inaccessibility is by asking a sighted person to help me. This does not square with the independence and dignity you promote, does it? If you need a beta test of an Accessible survey, contact me and I’d be glad to help.” Nothing happens.

I hear at a neighborhood meeting that they’re going to put a traffic roundabout in the neighborhood, which will be good for traffic flow but not pedestrians and most especially not blind pedestrians! Next blog may well be about scurrying around trying to make sure they know the best practices for roundabout accessibility.

All this “progress” is making me tired and cranky! Ironic, isn’t it?

The title of this blog could be the Six Days War, but I think that term has already been used in the Middle East. Because it was half price (a new one is coming out next week), I decided to take the plunge and buy an iPhone 5s. Here’s the report from the front lines:

Day 1:
Bought IPhone 5S from salesperson who didn’t know how to turn on the voiceover when we started. By the end he was excited about the possibilities as am I. My goal for today was learn to make a call on iPhone and I’ve done a couple. I also got the weather app to tell me about tomorrow’s weather. For the apps that involve much typing I’m going to wait for the speed dots which I ordered. They will give me some tactual orientation on the screen. So far so good. It stopped talking once but I toggled a switch and it started babbling again. I’m getting tired so better quit before I break it.

Day 2:
I woke up in the middle of a horrible dream about being totally lost in a graduate program in philosophy out east. Even I can figure out where the totally lost part of that dream came from. My Facebook friends sent lots of encouragement about tackling IPhones and one guy even sent links to tutorials.
I think my computer got jealous! I was reading on the Internet about the wonders of Siri and suddenly Internet Explorer wouldn’t work any more. Four hours later including a long session over the phone with the computer help desk at school and I have a new version of Internet Explorer which fixed the problem. After taking a nice walk between storms with Luna, I got back to work.
I sent myself a message, which Siri does fine, but she won’t delete the messages. It took me a while to paw around and find the delete button but I got the job done. I told her to find a recipe for baked corn fritters and she did nicely. I just told her to wake me in ten minutes, so we’ll find out how the alarm works. Tomorrow’s job is to skim an iPhone for seniors Bookshare book. Yes I can. The alarm rang and eventually stopped whether because I found and hit the delete button or because it got tired who knows.

Day 3:
My goal for today was to get so I could dictate to fill out forms instead of trying to type on their keyboard. Luckily I had to go to church and farmers’ market and cook corn for tomorrow’s brunch so I did accomplish something today. A neighbor figured out there was “dictate” as an option for messages and notes but not in apps like BARD and Newsline where I need it. A listserv of blind people got me two responses but their solutions didn’t work. Apple Care Support was closed by the time I called. I submitted the question on Applevis website. So all avenues were explored, but goal was not achieved.

Day 4:
I am making some progress today. Took my first two pictures, Luna’s hindquarters and a selfie that makes me look 100 pounds heavier mean and exhausted. That’s what fighting technology will do for you! No useful help from Applevis or listserv, just people saying “dictate” works for them. So I called Apple and talked to a pleasant woman who got to where she understood my question and then put me on hold for a half hour after which I hung up. While on hold I managed to get the dictate option to show up on Google search, but not on either of the blindness apps. Go figger!

Day 5:
Labor Day I labored a bit to use Newsline and WI Public Radio apps. Successfully enough to feel comfortable using them if I was away from my computer which is still easier to use. Then I did some practicing with the phone and message apps. Still a bit of panic when the phone rings to figure where to poke to answer. Then I signed up to receive emergency campus notifications by text. I think that will include storm notifications. Enough laboring for one day!

Day 6:
To check Verizon minutes and data usage, you have to have a second level of security created by picking an image (no link provided even if I knew what the image was to pick it). But under accessibility I did find a phone number where I could check usage. I asked Siri to check my usage and she said she couldn’t and corrected my pronunciation of Verizon. So now I’ve been corrected by Siri. I succeeded in downloading the Kindle app downloading a book and starting to read it. Whew! Buoyed by this success I signed into the BARD (books for the blind from NLS) app which thankfully one only has to key in email and password once to do.

So after six days, I can do what I want to do on the IPhone but often it’s slowly, very slowly. Now on to the next phase of learning, figuring out things to do where this technology will be a plus for me. That’ll involve trying a lot of apps and practicing tasks so they become easier and quicker. Siri and I aren’t best friends yet, but I do plan to go to that movie about a guy who falls in love with Siri, called “Her.”

As I get ready to celebrate a younger friend’s 65th birthday, I’m reflecting on some anniversaries. The We All Love Our Pets program I started turns eight this month. This blog turns two and Luna and I celebrate our second anniversary.

When I read an article in a women’s magazine about elders giving their Meals on Wheels to their pets because they couldn’t get out to get pet food, I was appalled and decided to start a We All Love our Pets program in Eau Claire. I modeled it on the national program, but use a volunteer team I’ve assembled under the auspices of the local Humane Association to do the delivery. We started with five customers and now have over thirty. We’ve experienced a 23% growth just in the last year.

To get on the program, people need to meet two out of three criteria: poor, elderly and disabled. Most meet all three criteria. Each month I call and see what they need and then later in the week shop and deliver. On the August delivery, my volunteer driver and I went 45 miles around the city to deliver cat, dog, fish and parakeet food and cat litter to twenty-one people. The day before another volunteer and I had shopped for the stuff and delivered to ten people living in a high-rise for elderly and disabled people.

In addition to meeting great humans and cute animals, I’ve learned a lot about living with grace and style in poverty. One gal cheerfully commented that after paying her bills she had $4 to spend during the month, but it would be okay because she could go to the food pantry and the soup kitchen. As Herman Melville said: “Of all the preposterous assumptions of humanity over humanity, nothing exceeds most of the criticisms made on the habits of the poor by the well-housed, well-warmed, and well-fed.” Their animals are such sources of joy to my pet food program customers. It reminds me not to take Luna for granted.

We shared our second anniversary by delivering pet food, going to Mass and my sharing a last bite of a wonderful piece of quiche a friend gave me with her. As I think back over our two years together, I’m struck by how subtle and intuitive she is. To tease me she tries to walk past church instead of turning in but does it in such a way that I know exactly when to turn. She lets little dogs win at tug of war so they’ll play with her. She sniffs my face and my backside when I’m sick to decide whether to let me sleep extra or not. After two years we’re reading each other’s signals well and I look forward to many more years working with her I hope.

In two years this blog has attracted 169 of you fine folks to follow my adventures in aging and reflections on disability issues and other weighty and mundane matters. “Kathie Comments” has not gone viral and is not among the top fifty humor blogs, but followers occasionally cheer me on and comment that they’ve learned something. It’s been a great way to motivate myself to reflect on daily events and dig a little deeper to find meaning in them. I’ve been in a blog carnival and on a blog tour and helped to start a blog for a group of Wisconsin blind writers. The haiku I wrote for my friend on turning sixty-five could serve as my haiku on two years of blogging:

I made it! I’m proud.

Work, books, people I’ve helped.

Forward to more fun.

Being a bookworm can boost well-being as much as a $2,286 raise according to the August issue of Prevention magazine. I found this tidbit as I trolled through my favored sections of nine newspapers today using NFB Newsline. Earlier in the day I’d skimmed ten books on philanthropy for background for a talk I’m giving in September using Bookshare. In the evening I settled down to read On Such a Full Sea for an upcoming book club. August 9 is listed as Book Lovers Day, but for me every day is I Love to Read Day.

In honor of Book Lovers Day I put out a notice of this little known holiday on five listservs of blind bibliophiles I’m on, as well as my Facebook page, asking what folks were reading. Of the thirty responses I got, most were reading novels — everything from science fiction to historical to romance to best sellers. One person said they read mysteries during the day but nonfiction at night so they didn’t get spooked. Another talked about the novel she and her husband were reading together on CD. Doesn’t that sound romantic?

Of course my daily reading also includes the hundred emails I skimmed and the fifty Facebook posts I zipped through. No wonder the magazines I get in Braille are stacking up even though I thought I’d tackle those stacks in retirement. Not having had much access to written matter as a child, I can’t bear to toss them until I’ve at least skimmed them for articles to tear out.

One of the emails was notice of a contest for Seedlings braille books for kids www.seedlings.org where you could write a blurb and win $100 worth of free books. I submitted the following:

“I’ve been a Braille reader for almost sixty years. As an adult I was delighted to use Seedlings to buy books so I could read to nephews, and now great nephews and great nieces. I also have become an honorary Pank (professional aunt, no kids) to blind kids taught by a friend of mine who teaches blind children in Wisconsin. Because of Seedlings there are so many more children’s books in Braille than when I was young. It makes my heart happy.”

Just in case you’re not convinced yet that reading rules, I’ll close with the joke of the day that was one of those emails I got:

The teacher wrote on the blackboard, “I ain’t had no fun all summer.”

“Now Paul,” she said. “What shall I do to correct this?”

“Get a boyfriend.” Paul replied.

We dedicated a sculpture of a guide dog complete with harness in honor of guide and other assistance dogs on the university campus where I used to work on July 25. Over 150 people and seven assistance dogs were in attendance. The dogs ranged from pups in training to be Leader Dogs to working assistance and guide dogs to my retired guide dog. The people ranged in age from six year-olds to eighty-something folks. A state senator and a state representative came with a proclamation and two city council folk were there. Friends and colleagues from the university, book clubs I’m in, church, community groups where I volunteer and people from my neighborhood showed up. Speakers from the university’s chancellor to a recent graduate who is partnered with a mobility service dog talked about partnerships, respecting the abilities of people with disabilities and interdependence. Refreshments included bone-shaped iced sugar cookies in the university’s colors.

Interdependence was present all the way along from my finding willing partners to help fund the sculpture to various offices on the campus working together to get the statue placed and the dedication event publicized and carried out. The feel of the event was the community celebrating the gifts of all its members. Education happened. A friend emailed me that he came in the building as a gal in a wheelchair wheeled up and her service dog jumped up to push the electric button for the door opener. He’d never seen that happen. People felt the braille on the plaque as well as patting the 150-pound bronze statue of the guide dog. The dog was described as looking noble, intelligent and magnificent and the ceremony as moving. Both local television stations and the local public radio station had pieces on the statue dedication.

Now the sculpture will take up its job of educating and welcoming people to the Student Success Office on campus which houses various kinds of tutoring and services for students with disabilities. Eau Claire gave it a grand welcome.

Bronze dog sculpture on display in Centennial Hall at UW-Eau Claire

Recently I had the opportunity to be part of a local delegation of parents who have adult children with severe cognitive disabilities. We met with the executive committee of our state’s Board for People with Developmental Disabilities. They’re a state agency receiving some Federal funds charged to make recommendations on service delivery, offer resources, hold conferences, etc. Considering new federal CMS regulations and the Workforce Innovation and Opportunity Act soon to be signed into law, there’s talk of phasing out center-based workshops and day services.

All of us are in favor of work at a competitive, living wage for all, no matter whether the person has a disability or not. All of us are in favor of full inclusion of everyone in community life. But the devil is in the details, as usual. Some people because of disabilities will never be able to work and earn a living wage, but may be able to do some work tasks slowly or with a lot of help. Some may not be able or willing to volunteer in the community. If work and preparing to work are the only options available, I fear that these folks will be shunted aside and not have a place to go and things to do.

When states get rid of sheltered workshops (as such services used to be called), they do so for many good reasons, and e.g. they were poorly run, warehoused participants and didn’t move people through the service to competitive employment where possible. There may be bad programs in Wisconsin, but the local ones I’m familiar with are well run, staffed by caring individuals and do help people move on to real jobs in the community if possible. Just like in every community, there aren’t enough real jobs and sometimes the community does not want to embrace a person with major disabilities in their business, their church or neighborhood, etc.

It reminds me of de-institutionalization of the mentally ill in the ‘60’s. We thought the money and services would be delivered in the community. Sometimes that worked well but sometimes people fell through the cracks and did not get needed mental health services. Nowadays we have high rates of people in prisons, jails and living on the streets with mental health issues. So many people are better off because of de-institutionalization, but some aren’t. I fear by closing all work centers/sheltered workshops we may do the same thing to another group of vulnerable individuals — people with severe cognitive disabilities.

So I went to a meeting with several awesome parents who wanted to lobby for a continuum of services, not just for their loved ones, but also for other people’s adult children with cognitive disabilities. Our pleas were met with statements like: “Our hands are tied” and “change is hard”. We didn’t get a meaningful discussion of how we can work together for good services for all. But I’m betting these activist parents will have more discussions with their legislators and other state agencies and won’t quit until they do get some real help from their government.

Maybe they’ll nudge services into looking at options other states have found useful. A friend who works in Washington told me that “In Washington, we have a service called ‘Community Access’ for people of working age whose barriers to employment cannot be overcome by the system. When I was county manager of a community access program in an extremely rural area, what we did was identify the person’s gifts, contributions, and interests, find the kinds of resources and activities that were available in the community, and connect people to those resources and support them to be successful in them.”

It was a privilege to labor alongside the parents even though the particular disability they’re dealing with is different from mine. I was blessed to have parents who advocated for my needs to be met. It’s only fair that I carry that forward for somebody else’s kids.

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