Slivers of Hope

23/01/2026 //
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As equity, diversity and inclusion become politicized, needed programs cut and public  respect for people living with disabilities wanes, I find myself grasping for slivers of hope. Here are  a few that have come my way recently:

  1.  At age 76, I was gifted with my first Barbie, Blind Barbie. A billion Barbies have been sold. In the past seven years, Mattel has produced several Barbies with disabilities, including Blind Barbie in 2024 and autistic Barbie in 2026. Barbies were first sold in 1959. I was ten then and into reading, puzzles and stuffed animals, definitely not Barbie.  Sixty-six years later, I’m still not a fan of her rigid plastic exterior, her skimpy clothing, her unreal body and her shallow consumeristic lifestyle. Blind Barbie has a cane and dark glasses perched on her head.  The packaging says Barbie in Braille.  Since she arrived in my house, I’ve been looking hard for something to love about her.  So far, I’m glad she exists for young blind girls who might like to be part of Barbie’s world. I do wish there were other blind dolls readily available for girls not into that world.
  2.  Mona’s  Eyes

Written by Thomas Schlesser

Translated by Hildegarde Serle

Read by Holly Lucas

Reading time; 15 hours and 53 minutes

DB132861

Ten-year-old Mona and her beloved grandfather have only fifty-two Wednesdays to visit fifty-two works of art and commit to memory “all that is beautiful in the world” before Mona loses her sight forever. While the doctors can find no explanation for Mona’s brief episode of blindness, they agree that the threat of permanent vision loss cannot be ruled out. The girl’s grandfather, Henry, may not be able to stop his granddaughter from losing her sight, but he can fill the encroaching darkness with beauty. Every Wednesday for a year, the pair abscond together and visit a single masterpiece in one of Paris’s museums.

I’m glad this book was available in audio from the National Library Service fairly soon after it came out in print. I like knowing what’s being written about blind folks, even if it is that old trope of “tragic descent into darkness”.

3. In October I purchased Rayban 2nd generation smart glasses. In addition to hands free texting and listening to music, they have the capacity to read some and describe scenes.  I’m using them on a daily basis to go through mail and toss the junk. For serious reading of the mail, I still prefer a human. I’m using it to identify teas and boxes and cans of food. I ask it if a light is on, which has saved me a few pennies, I’m sure. With less paid reader time and less electricity wasted, I’m on track for them to pay for themselves in four to six months. I wish I could read a book with them, but they’re not that “smart” yet.

4. My screen reader on my computer, JAWS, has recently upgraded to have a scanner built in so it can scan and read PDF documents that aren’t done accessibly to begin with. That’s proved useful repeatedly for some of my committee work. The less I have to ask others to make things accessible (even though they should and in some cases have to by law), the easier it is.  

None of these improvements are game changers, but each makes my life a little better. Here’s to more access and better representation in 2026!

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Categories Aging

Happy Holidays

13/12/2025 //
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                                    2025 Haiku Holiday Hope Log

Instead of setting a New Year’s resolution this year, I decided to do a haiku containing some hope each day. Here’s some of  my offerings to give you verbal snapshots of my 2025:

“Today is a wonderful day. I’ve never seen this one before.” -Maya Angelou

January 1: Two sisters for lunch. Bickering but giving grace. Was it black-eyed peas?

January 5:  “Service Berry” and  “Be Ready for the Luck”—books  reading gives hope too.

January 6: Butter and cornbread—simple food reminds me to  be glad for taste buds.

January 8: Five years with Calvin.  Guide tease,  loyal, stubborn.   Please live forever, friend.

January 16: Lunch and tea with friends. Time for good conversations—retirement rocks!

February 10: Cartoon woman says:  “If aliens kidnap me,  I’ll go willingly.”

February 14: I love your soft ears.  You hear what’s in my heart—my    furry Valentine.

February 21: Russian proverb says  only free cheese is in a  mousetrap—love proverbs.

April 4: Friends with dementia  who don’t know it make me sad.  Lord, let me stay kind.

May 5: Six hours of meetings.  How did I ever do it  day after day—whew

May 10:  Fortune from Alexa:  “Woman who seeks to be equal  with men lacks ambition”

May 18: A wordless blessing  for pastor of IM church  by member spoke volumes.

May 28: Aging: dimming  the light or deepening of  the glow—you decide.

May 29: Lunch with fellow board  member—we disagree some   but did so kindly.

June 6: Got someone to use “oblivious” instead of  “blind”—bit of progress.

June 11: Birds sing before dawn.  How do they know it will come?  Faith or they cause it?

June 13: Friday the thirteenth—what lucky thing will happen?  Bridge games went my way.

June 23: “Life isn’t a race.  We’ll all cross the finish line.  Breathe!” thought from prayer group.

June 24: Requests for help from  young disabled  advocates. Guess I’m an elder!

June 26: Heard about corpse flower blooming in MN.  It’s named.  Want one with your name?

July 8: Fresh peach from a friend;  the taste of summer and the  sweetness of friendship.

July 18: Computer update  not as bad as expected—caught up by Friday.

July 27: Day after ADA day: back to working for access  “shall overcome some day”…

August 2: I told Calvin to stop, meant to say Alexa stop  timer. Neither stopped.

August 7: Sharing tomatoes I have grown, is as much fun as eating them is.

August 18: Pandas eat twelve hours a day. I thought I liked to snack!

August 28: Counted ten blessings before got up including no alarm today.

August 30: Play ten minutes of Internet and Alexa games every night. Fun!

September 12: When playing trivia,  a team with young and old works.  Diversity yes!

September 21: World Gratitude Day:  grateful for freedom, Calvin,  books, health, and much more.

October 4: Reviewing grants shows  me so many local orgs  that Need money Bad!

October 23: Got smart glasses that  can identify money send texts and make calls.

November 16: Visited brother  in Chicago for his 80th  birthday party—wow!

            In case you’re still looking for sweet, but not syrupy holiday reads, as I always am at this time of year, here are the three I’ve found this year:

“Esther’s Gift” by Karon

“Miracle on the 17th Green” by Patterson

“Winter Solstice” by Pilcher

I’d welcome yours.

Hope your year is full  of love, work fun and uplift.  Happy holidays!

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Categories Aging

                                    Saga of Smart Glasses and Relatively Intelligent Blind  Human

27/10/2025 //
4

            It took a lot to get this blind from birth human to go to Target’s optical department and get fitted for glasses. Smart glasses that have sold over two million pairs since their launch in 2023 have intrigued me.  The second-generation meta-Ray-Ban glasses with a price tag just under $400 won me over. Hands free, they’ll tell me where I am, read signs, read labels, send texts… all relying on AI. However, you can also link to Be My Eyes and get a human opinion.

After struggling with the website and trying Best Buy where you could virtually, but not really try them on, I went to Target.  I took along a sighted friend to make sure what I chose for style gave me a professorial look, not a blind beggar look. The staff was friendly, helpful and eager to learn with me. My order was  placed on October 10. The  only thing that wasn’t well done so far was Target’s satisfaction survey by email. I thought I was giving high ratings and apparently, I gave low ones. I got an email asking what was wrong, so replied that the rating form was poorly laid out for the blind.

Then I returned to the mystery novel “The Killer Question” that I was reading and it turned out smart glasses were part of the plot.  Synchronicity anyone?

October 23: The glasses arrived and I got set up within an hour, including making a hands-free call to Be My Eyes. It’s a free service, staffed by volunteers, to remotely use the camera on my phone or smart glasses of a blind person to “see” for them.  A friendly gentleman answered immediately and said he could tell I was at Target because he saw a Target sign through my glasses.  As I left Target Optical,  I asked if they gave kids a sucker when they got their first set of glasses because I was feeling like a kid with new glasses.  They said, not usually, but they just happened to have a sucker hanging around that no one wanted, so I grabbed it. Now that’s superior customer service! I  went home to charge the case and take a nap.

            Before trying to make calls, I ate  the sucker to give me strength; artificial watermelon flavor, but not bad. Good thing I had it.  It turned out I had to add contacts before I could text/message them and that taxed this old brain to figure out how to do that. But I prevailed. Tomorrow phone calls and reading an envelope.

October 24: I had great fun showing the glasses  off and finding what they can do; e.g. reading fliers, answering questions about its mostly accurate descriptions of the scene around it, identifying paper money correctly etc. The sound on phone calls is so good that the person on the other end of the line didn’t know it wasn’t my usual landline. It can take notes, and set  timers, but not do alarms.   It can tell jokes,  give riddles and translate short phrases into several languages.

October 26: My usual approach to new tech is to play games with it or do anything else fun I can think of just to keep motivated to keep trying.  I had human company for the weekend, so didn’t play a lot.   I have gotten recipes, weather reports, classical music (via IHeart), and connected with a GPS app for the blind called Indigo. It can locate points of interest near you and plan routes and give turn by turn directions. One of the points of interest it noted was a “Gentlemen’s Club” at 1614 State Street only a block away. I have no idea where it got that idea.

By the fourth day, I did what I’ve seen lots of sighted people do, forget where I put my glasses and then realize they’re on my face! Next steps are to figure out which tasks AI can do a decent job of and for which ones I’ll need to call a human (Be My Eyes).

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Categories Aging

                             Banned Books Week

01/10/2025 //
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          Banned Books Week 2025 is scheduled for October 5–11, 2025. The theme for the week is “Censorship Is So 1984: Read for Your Rights”. The event, supported by organizations like the American Library Association (ALA), PEN America, and others, aims to raise awareness about book bans and celebrate the freedom to read.  

            From my perspective as a blind person, availability of a book in alternate format (recorded or Braille) determines if I have the freedom to read it. I use three libraries on a daily basis to meet my reading needs: The National Library Service for the Blind and Print Disabled with its state branch in Milwaukee, my public library  (including Libby for electronic books) and Bookshare (a project of Benetech, mostly funded by a Federal Education grant.)  Of course, I occasionally buy a Kindle book or an Audible book, but can’t afford to buy all the books I need to read and they’re not all available from Kindle or Audible anyway…

The recent defunding of Benetech’s Bookshare program, if it is not reversed, will restrict by 90% what is available to me to read.      

The 2026 Budget Request will eliminate critical funding for special education services that serve students with disabilities in every US district. Specifically, the budget request will defund the Education Technology, Media and Materials (Ed Tech) Program, which provides essential accessibility technology and services that enhance learning outcomes for millions of US students with special needs.

The Ed Tech Program ensures that students with disabilities receive a free, appropriate public education as outlined by the Individuals with Disabilities Education Act (IDEA). This includes timely access to learning materials through Bookshare, an accessible eBook library that provides free access to over 1.4 million textbooks and classroom learning materials in alternative formats like audio, large text and braille. Without these resources, students with disabilities like dyslexia, blindness and cerebral palsy would not be able to access learning materials in ways that work for them, pursue higher education and build future careers.

Adults like me,  who use Bookshare, can read for pleasure and for career advancement. Public libraries can’t afford to offer all their books in alternate format and the National Library Service’s offerings are about a tenth of what Bookshare offers.  In order for freedom to read to be a reality for blind and dyslexic folks,  we must vote to restore funding for the Ed Tech Program and fully fund Institute for Museum and Library Services that partially funds regional centers of the National Library Service.

            I’ve written my Congress people, but so far have only gotten a form letter from one saying he believes in education. His voting record would make me wonder.

Moral of the story:  Read what you can, while you can, and help others do likewise. 

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Categories Aging

            The Month After Celebrating ADA 35

25/08/2025 //
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“O snail, climb Mount Fuji,  But slowly, slowly…”—Haiku  Master Issa

What happens after the ADA 35 celebration, after the thank you notes are written and the leftover cookies consumed? Here’s one blind woman’s  month of new issues and new opportunities.

  1.  For Inclusive Ministry service for people with disabilities and friends  this month, the text was Psalm 27:1 “The Lord is my light and my salvation.”  I’ve worked with this group for five years, so they knew to use other words in the discussion like “warmth” and “strength” so God’s power was not just described visually.  Each participant also received a battery-powered candle so all could safely use a candle. I pointed out there was no way for me to know if the candle was turned on or off other than by memorizing  if the switch toward the center means on or off. I did Internet research and came up with the impression that there are flickering battery-operated candles where the wick moves a little. Sighted candle aficionados confirmed this, so I asked the head of the group to purchase one. If she doesn’t have the bandwidth to do this, I will.  I’d rather the organization had skin in the game, not just that I  make the accommodations that I need. Somebody else might need it too! My friend was too busy, so another friend ordered one from Amazon. She has Prime so we can return it if I can’t feel the flicker.
  2. The city’s weekly newsletter mentioned that the City of Eau Claire is working on an ADA transition plan (an audit of all city services and programs for ADA compliance). The county has not done one and would probably say they can’t afford to. I wrote the city manager and asked if I could see theirs (even though it’s not finalized) so I could get some ideas for the county. That way I could present our new county administrator with a few easy wins when I have my meeting with him in October.
  3. A faculty member wanted info about self-assessments for depression and substance use she could recommend to her students. I recommended UWEC’s fine counseling service, of course, and then took a look at their website. Sure enough, links to good self-assessments were there. I decided to take one, just to see if it was screen reader-friendly. It wasn’t. So, I contacted our counseling service director, our disability services office, the counseling service that designed the assessment and the company that maintains the website that has the form on it.  From past experience I want a chorus of folks asking for ADA compliance, not just me. I have no money or power, just awareness of the need.  I got a support  ticket number automatically generated and mild interest from the helping professionals with my first round of emails. It turns out that the Counseling Service is using an out-of-date version of the forms and the company thinks their current forms are ADA compliant. When I hear our outdated forms have been updated, I will test them.  I love to celebrate success and I’m cautiously optimistic on this issue.
  4. The screen reader for which I bought a license for the university for a year, was finally installed in a university computer lab, about eight months after I plunked down the money. As I suspected, it took about three trials with folks from the university’s computing department and the office of services for students with disabilities working with me to actually make it work. But now they know how to do it and can install it in the library, a dorm computer lab or wherever it is needed.
  5. I made my plane reservations to fly to Chicago for my brother’s 80th birthday. Because of people abusing the system with “emotional support turkeys” etc. new paperwork has been added with lots of questions about service dogs and attestations about my guide dog’s training and good behavior, with threat of prosecution from the Department of Justice were I to lie.  Somehow, I see irony in this.  But since this is not a political post, I’ll leave the subject hoping I’ve got all paperwork complete and filed correctly.
  • I saw a wonderful book recommended on Facebook:

Owning It: Our disabled childhoods in our own words edited by Jen Campbell, James Catchpole and Lucy Catchpole

I  recommended it to the local Library, the university Library and the National Library Service for the Blind for purchase.

  • The month was capped by participating in an emergency simulation of a plane crash at the airport to train Air National Guard,  local law enforcement, fire and other emergency responders.  I again recruited other folks with disabilities to participate so emergency personnel will know how to help us too. There were about 50 of us and we got to walk onto the C-130 plane that had supposedly brought all of us “veterans” here.  All the different medical and emergency personnel had different paperwork, so there was some confusion about all that, but everybody lived and got pizza at the end. I could tell improvement from three years ago in how disabled folks were interacted with. Calvin was treated like royalty and did get a bite of pizza at the end. Tax dollars well spent.

It was kind of a typical month in that some of the access needs were small and easily met.  It took the interest and help from allies to get changes made and some issues didn’t get solved. The most far-reaching one, getting the city and county to work together on access, hasn’t moved at all. I’m pondering how to approach it next. As the saying at the top of the post says, sometimes access is achieved “slowly, slowly”.

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Categories Aging

             Many Flavors of Disability Pride

30/06/2025 //
1

            Have you heard that July is Disability Pride month and asked yourself what’s that all about?

            Over 61 million Americans have disabilities and some are proud about it in various ways. The dictionary defines pride as a sense of dignity and self-worth.  As we celebrate the 35th anniversary of the Americans with Disabilities Act, it seems like a good time to examine disability pride.

            Long ago, shame and denial were the main ways people dealt with disabilities. Stigma remains, especially for invisible disabilities like dementia and hearing loss to name just two. Disability was viewed as a tragedy and one suffered from it and tried to overcome it. If it was talked about it was in whispers and or people with disabilities were put on pedestals if they “overcame” their disabilities which were thought to be pervasive.  “That’s wonderful” was applied to those who did quite “normal” things.

            Most people have seen the old “handicapped parking” symbol and some have seen the newer “accessible parking” symbol showing the wheelchair user moving forward.

            Have you seen the disability pride flag? It  was first created in 2019 by writer Ann Magill. She designed it to represent solidarity, pride, and acceptance within the disability community. The original design was later updated in 2021 to be more visually accessible.  The disability pride flag uses five colored stripes to represent different categories of disabilities: red for physical disabilities, gold for neurodiversity, white for invisible and undiagnosed disabilities, blue for psychiatric disabilities, and green for sensory disabilities.  I wonder if the next version will have a mixed stripe of some kind to stand for the many folks who have more than one of the above.

Deaf pride  is a concept where individuals who are culturally Deaf embrace their deafness as a positive aspect of their identity, rather than a disability. It’s about recognizing deafness as a cultural and linguistic difference, with its own unique language (like ASL or BSL)  and traditions. Deaf pride involves a sense of belonging to a community with shared experiences and values, and it can involve advocating for the rights and inclusion of Deaf people. Deaf people who capitalize the “D” in Deaf are identifying with pride in the Deaf culture.

            Another group that is starting to take pride in their differences from mainstream non-disabled folks is people with learning disabilities/differences and neurodivergences. www.ldpride.net  Books like adhd Is Awesome by kim Holderness and Normal Sucks by Jonathan Moody are examples of this “Viva le difference” approach.

            Most of the people who outspokenly embrace their disabilities/differences seem to have had the difference from birth and/or are younger. Newly disabled folks often struggle with denial and are figuring out how to cope. Pride may come later.

            The experiences across disability groups that we share, like advocating for societal change through legislation like the ADA, bring us together in a community of struggle. Celebrating the ADA and other victories can give energy to continue to go out and love, work, play and pray in a world not designed for us. 

            Another way to build community, whether you’re a person with disabilities or an ally, is reading. Here’s the Forest Park library’s list for Disability Pride month:

Sensory: life on the spectrum : an autistic comics anthology

Disability pride: dispatches from a post-ADA world by Mattlin, Ben

Death of the author: a novel by Okorafor, Nnedi

Hunchback: a novel by Ichikawa, Saō

This is body grief: making peace with the loss that comes with living in a body

by Mattingly, Jayne

Unmasking for life: the autistic person’s guide to connecting, loving, and living authentically         by Price, Devon

Always remember by Balogh, Mary

Brittle joints by Sweeney, Maria

The Mars house: a novel by Pulley, Natasha

Shattered: a memoir by Kureishi, Hanif

The silence in her eyes: a novel by Correa, Armando Lucas

After the miracle: the political crusades of Helen Keller by Wallace, Max

Born extraordinary: empowering children with differences and disabilities by Zucker, Meg

The country of the blind: a memoir at the end of sight by Leland, Andrew

Death Valley: a novel by Broder, Melissa

Parenting at the intersections: raising neurodivergent children of color by Ramesh, Jay

Odd girl out: my extraordinary autistic life by James, Laura E

The collected schizophrenias: essays by Wang, Esmé Weijun

Mean baby: a memoir of growing up by Blair, Selma

Deaf republic: poems by Kaminsky, Ilya

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Categories Aging

Joys of Aging: Multiple Perspectives

02/06/2025 //
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            May is Older Americans month, so I’ve been reflecting on being older, particularly the joys of being older. For research, I asked a couple friends over ninety for their opinions, CHATGPT and consulted a few  bestselling books.

            CHATGPT took about twice as long as usual to answer the question, but came up with the following list for “joys of aging”:

1. Greater Self-Acceptance

  • You know who you are and feel more comfortable in your own skin.
  • Less pressure to meet others’ expectations.

2. Deeper Relationships

  • Friendships and family bonds often grow stronger and more meaningful.
  • You value quality over quantity in social connections.

3. Wisdom and Perspective

  • Experience gives you insight into life’s ups and downs.
  • You’re better at handling stress and navigating challenges.

4. Freedom from Superficial Concerns

  • Less focus on appearance, status, or material possessions.
  • More focus on what truly matters.

5. More Time for Hobbies and Passions

  • Retirement or reduced work responsibilities give space to pursue interests.
  • Whether it’s gardening, painting, or traveling—there’s more time to enjoy life.

6. Confidence and Assertiveness

  • You speak your mind more freely.
  • You’re less afraid to say “no” or stand up for yourself.

7. Grandchildren and Legacy

  • Enjoying the next generation without the pressures of parenting.
  • Passing on wisdom, traditions, and stories.

8. Slower Pace, Mindful Living

  • A chance to savor the moment and live more mindfully.
  • Less hustle, more presence.

9. Financial Stability

  • Many people are more financially secure later in life.
  • Less worry about student loans, mortgages, or raising children.

10. Appreciation for Health and Life

  • Greater gratitude for your body, mind, and the life you’ve lived.
  • Even small joys become more precious.

11. A Sense of Accomplishment

  • Looking back on a life of work, relationships, and achievements.
  • Satisfaction in seeing how far you’ve come.

12. Spiritual Growth

  • Many find a deeper spiritual or philosophical understanding.
  • A time of reflection and inner peace.

Books like Outlive by Attia and Ageless by Steele all tout taking charge of your aging, pursuing good health and being productive as ways of creating a good old age. The Japanese art of ikigai (Ikigai by Miralles) suggests that aligning what you love with what you’re good at, the world needs from you, and will compensate you for is the way to a happy old age. Brooke Shields (who is 59) points out in her memoir/essay book Brooke Shields Is Not Allowed to Get Old. Our society still wants to grow old but not show any of the wrinkles or disabilities that often come with it.

      If you prefer fictional representations of models of aging and liked A Man Called Ove, I can recommend The Little Old Lady Who Broke All the Rules by Ingelman-Sundberg and How to Age Disgracefully by Pooley that romp through aging.  For more thoughtful reads, anything by Elizabeth Strout like Olive Again is a good choice.

      For live human sources, I consulted two friends, both of whom are in their nineties and still live in their own homes. They mentioned: people not expecting as much from them because they  understood that their  energy is less, and still being able to think, and do some things for themselves as joys of aging. One even mentioned being able to still do housework. She’d recovered from a broken shoulder recently and went six weeks without being able to do much, so was enjoying washing dishes and doing other two-handed jobs.

      I agree with all of the above thoughts. If I had to choose one thing, it would be that I can make choices about how I love, work, pray and play.  My choices were more circumscribed when I was working. I hope you find and savor much joy as you age.

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Categories Aging

Every Day Is A GAAAD Day

12/05/2025 //
1

On May 15, Global Accessibility Awareness Day is celebrated, but for me as a blind person, GAAD is every day.
Recently, I sent the following email to the company making a companion robot for elderly people that is not available to blind, Deaf or folks living with dementia:
“I qualify for an Elliq except for the fact that I’m blind. I was told some of its features would not be accessible, museum tours, exercise demos, etc. I have lived 75 years as a blind person in a sighted world where things are at best partially accessible. I’d like to work with you for free, if necessary, to help make accessibility upgrades to the device. Then you could market to the blind and low vision segment of the aging population instead of just saying “no”. Interested? I can be reached at [email protected].” I never heard back.
The university is starting a new science degree in assistive systems and robotics engineering. The major will investigate the use of new technologies and robotics to help with daily personal tasks, personal mobility, rehabilitation, and communication. Hopefully, students will be taught universal design principles, so retrofitting the robots to include Deaf, blind and people with dementia will not be necessary because they’ll be accessible out of the box.
On another day I worked to explain to librarians choosing award winning children’s books with disability content why they should mandate publishers give book files to Bookshare http://www.bookshare.org (a digital library for those with print disabilities). Regular libraries buy one audio book approximately for every twenty-five-print books they buy, so those of us who don’t read regular print have a 4% chance as a nondisabled person of being able to get the book from our public library. New formats for children’s books like audio-enabled books are great, but rare. As more books are available digitally, like from Hoopla and Libby, accessibility is improved. But these are expensive services for libraries, so they may not be able to afford the full collection of what’s out there. When I searched for the nine winners of the children’s books with disability content (SFBA awards), five were available from Bookshare, two more from National Library Service for the Blind and Print Disabled and two in audio-enabled format from my public library. The good news is I can read all the winners.
If each of us does what we can, where we can, we’ll have a more accessible world for all of us.
• Label those pictures in your social media posts so I know what you’re excited about!
• Volunteer for Be My Eyes duty https://www.bemyeyes.com
• Advocate with Congress so vital programs like Bookshare and National Library Service are not cut.

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Categories Aging

Expensive

28/04/2025 //
1

Here’s a quote that     I am using to put a situation I had in perspective.

“Healing is a constant battle between your inner child who is scared and just wants safety, your inner teenager who is angry and just wants justice, and your current self who is tired and just wants peace.” –Brene Brown

Recently,  I was at a county breakfast for employees, being gracious, thanking them for their work, etc. representing the board. A fellow board member  gave me a ride and was sitting next to me. We were in a group including the head of computer services for the county and I was talking with him about an upgrade and appreciating their accessibility work. The other board member  jumped  in to say “Kathie has been so helpful pointing out how we could help deaf and blind people. But she’s expensive.” Conversation at the table ceased. Without thinking, I said “You bet I’m expensive and worth every penny of it.” People laughed and conversations picked back up.  I don’t think she has any idea how hurtful  that remark was. I guess what she was trying to communicate is it’s expensive to make accessibility changes. But they haven’t made many and if they did it right to begin with, they wouldn’t have to change it.

            The child part of me just wanted to hide. The adolescent part of me wanted to rip her tongue out of her mouth and the adult part of me just wanted to have everyone go back to comfortable chitchat as quickly as possible.

            When I posted about the incident on Facebook,   other folks with disabilities have heard similar remarks, especially  recently it seems and thought my response was okay. A couple responses I liked were: “Expensive compared to what?” and  “Did you really mean to do disability-shaming? You’re better than that.’”

             Somehow, I don’t think quoting a study would change her heart or mind, but there is one I found by Googling on my computer with a speech program I bought myself:

            In a 2023 study, the median expenditure reported by employers for one-time costs was $300, while the median for employers reporting an annual accommodation cost was $3,750. Employers surveyed reported numerous benefits of making accommodations, including: retaining valuable employees and improving productivity and morale.

            Within a few days, the board member called to apologize and explain what she meant:  basically, that people with disabilities and/or needs for interpreters are costing the county a lot and our budget is under increasing strain. She did say these needs were “important”. She asked that I come to her first rather than going on Facebook about my reactions. I explained that she was not identified by name and I was using Facebook to seek validation and get  help responding better. I described growing up being told I was expensive and being resented for my needs, so this comment hit a nerve. She said she didn’t mean it that way. We agreed to keep trying to communicate openly with each other. After a few days and some serious praying, I invited her to lunch.

            The lunch was pleasant and we chatted about our backgrounds and common interests. When I brought up the Breakfast, she quickly apologized again. When I tried to explain why being thought of as Expensive scared and angered me so, she said she wasn’t aware of some of the history I brought up and then just focused on concrete disability needs.  I left thinking she is a kind person with a charity model of being kind to “those people.” She did borrow my kids’ book, Your Treasure Hunt,  so perhaps we’ll talk more when she returns it. I’m sad that we didn’t get further, but relieved that the hurtful comment  wasn’t intentional and she will try to be nice to me and other folks with “special needs” (my term for her level of understanding.  Onward!

I’d like to implore those of you who want to be allies to try to say something when you hear “you’re expensive” remarks directed at someone with a disability. I know it’s hard to respond in the moment, but even later is better than just looking away and feeling uncomfortable. None of the people at the table said a word; I wish they had.           

I’m left with two pieces of unfinished business:

  1.  How can I give grace to the individual making the remark? My trust is way down. I can certainly work with her on county business, but interpersonally, I’m wary. Trust is both given and earned, so time will help and so will prayer to be forgiving.

2. How can we reframe as a society so that costs for disability accommodations are like costs for roads or drinking water instead of being perceived as nice, but optional? What is valuable enough for us to pay the price for it?

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A Busy Week of AI

17/03/2025 //
2

                                                A Busy Week of AI Exposures

            By Tuesday evening of a recent week, I’d had five  known exposures to AI. I’m intrigued, suspicious, and a bit horrified and it’s only Tuesday!

            The first exposure was participating in a study by a doctoral student for which I will be compensated with a small Amazon gift card. The study was described as:

“We are studying how to design mobile, wearable, voice-based, and traditional computing interactions to provide more accessible, efficient and enjoyable digital experiences.” Specifically, I sent them an image and then used an app they’ve designed to manipulate the image. I sent them a picture I’d Facebooked of a blooming amaryllis sitting on my dining table. I could get the image described, get questions answered about the image and then edit the image. Things I could do included cropping the image, brightening or darkening it and, adding text and stickers to it. After each edit it would describe it again. It was easy to use and definitely provided more possibilities for a blind person to work with an image than anything on the market now, that I know of.  Where it fell short in my opinion was it couldn’t make value judgments. For example, does adding a smiley face sticker to the picture add something or just look cheesy?

Next, I received an ad for:

Introduce +1 855-SHOP-GPT

Have you ever wanted a digital experience to feel like an in-person conversation? Innosearch AI is excited to announce our new, 100% free “shop by phone” experience to enhance accessibility by 10x. Shop using only your voice via your phone line. Browse billions of products, search from over 500,000 retailers, and compare products—all through simple dictation!

One has to sign up online using an email or social media. The service is great if you know what you want specifically, for example I asked it for samosas and it gave me reasonable choices at several stores. But if I wanted a new couch, it couldn’t tell me if it matched with the rest of my furniture. A person would have to be able to sign up online before being able to shop entirely by phone.

            Then came an email from the county telling me of a requirement to complete quarterly cyber security training because I’m a member of the county board. This quarter’s ten-minute training was about avoiding deep fakes. Bottom line, be suspicious about everything and verify requests for significant actions by some other trusted channel of communication before acting on them. Even if your boss asks you to send him a $5,000, check with him personally before doing it.

 Another email offered Gloo AI  which is a search engine with Christian values. It goes beyond just finding particular Bible verses to giving advice on “life’s big questions.” The devil is in the details, so to speak. Whose values?

            I’m all in when it comes to getting facts from Alexa, Siri, Chat GPT, etc. but I get queasy when it makes value judgments for me.

            To conclude my explorations, I had Chat GPT summarize this article, which it did a credible job of. It concluded with:

“In summary, the author is both intrigued and wary of AI, appreciating its utility but feeling uneasy about AI systems making value judgments for users.” Got that right!

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