August 6 I’ll train a few people to give audio tours to blind folks so they’ll be ready when a Smithsonian exhibit on bias comes to town in February. Most of the “training” will be practicing on exhibits at the Chippewa Valley Museum.

I looked around on the Internet for a quick and dirty handout but couldn’t find anything.

                Here’s what I wrote:

                                                                                Audio Description

                Individual audio description of a museum exhibit for a blind person can be a wonderful learning experience both for the describer and the listener. If you have the luxury of working with just one customer, you can ask them at the beginning if they like to stand near the case so they can see the exhibit, or if it doesn’t matter because they’re totally blind. Asking “How much can you see”? to a total stranger may be intrusive. Also ask how long they have to spend on the exhibit and if they have a particular interest in part of it or just want a general tour. 

                Describe in concrete words and short sentences. Give information like size, shape, color, what it’s made of, etc. Better to say “It’s as big as a bread box” rather than “it’s big.”  If you’re describing an unusual object, try to relate it to a common object. 

                Don’t spend time apologizing for not being good at this. The person will be likely to be happy that they’re getting any description.

                Point out things that are interactive, touchable, etc. and guide their hand to interesting parts of the object if it’s big. If something stands out or interests you, point it out.

                You can practice by adding descriptions to your Facebook or other social media posts of pictures. Blind friends will appreciate it anyway!

                If there’s lots of text, read a headline or first paragraph and then ask “Want more”?

                Guidelines will probably be enhanced after we do the training. A friend suggested I give an example and then show them the object so here goes:

                Get a picture in your mind’s eye of this object:

“It’s a model of an animal, made out of a silver metal. It’s about as long as a hand. Near the head it’s about an inch wide but narrows to a long thin curling tail. It has two front and two rear feet. There are scales aligned along its back. The mouth is open and teeth are suggested. It looks alert and ready to challenge you.”

It’s an alligator!

Did you guess it?

            On this day, when the second Continental Congress passed the Declaration of Independence, and Henry David Thoreau started his life at Walden Pond, I think a lot about freedom and independence. I’m deeply grateful for the freedoms I have, including freedom from want, fear, and disease. Then there are the freedoms to vote, to worship, to associate with those I choose to, to work for the common good, and to “pursue happiness,” among others. To me, independence more often means interdependence. Even Thoreau had to get his groceries somewhere! 

            A program on National Public Radio asked what song typified the American Dream. “This Land Is Your Land,” by Woody Guthrie, occurred to me. As I volunteer and work for justice in various ways, it feels more and more like “my land.”

            “We Shall Overcome” also quickly came to mind. Frequently when I advocate for increased access and get nowhere, I realize again the necessity of a “we” to overcome. I need the backing of a disability group, the ACLU, or some other big group to get even tiny changes to happen.

 But since this is a holiday, I’m just going to kick back and celebrate that I have the freedom to try advocating. Celebrating will include a walk with my guide dog, (free to travel independently as a blind person), listening to stirring American music on National Public Radio, and diving into a good book in accessible format (freedom to read for those of us with print disabilities).

            On the 26th of July, I’ll celebrate the 31st anniversary of the Americans with Disabilities Act. This is a far-reaching piece of civil rights legislation for equal access for the 19% of Americans who have disabilities. For those of us with disabilities, the ADA anniversary on

July 26 is sort of like the Fourth of July Independence Day again.  So celebrating is a good thing to do. There are many kinds of accessibility to celebrate in addition to curb cuts and wide doors, like service animals, hearing loops, and accessible websites.

            I’ll probably celebrate this second Independence/Interdependence Day in much the same way as the Fourth, but add some pushing for more access. A Smithsonian traveling exhibit on “The Bias Inside Us” is coming to Eau Claire in a few months. It’s totally inaccessible to blind people, so I’ve started working on that. Maybe I’ll nudge them on the 26th

            Feel free to enjoy celebrating ADA Day, even if you’re temporarily able-bodied. Caption your next Facebook pic you post with “look at the red rose I grew” instead of “Look at this!” I’ll imagine how good it smells even though I can’t see the pic. We can all savor independence and interdependence this month.

                I’ve been thinking a lot lately about friends and how the pandemic made me treasure them even more. When I saw a recent article by Paul Fanlund in the Wisconsin State Journal about friendships, I realized this may be one of the few good things to come from the pandemic—more valuing of friendships.

                Then my best friend from high school “found” me on the Internet. Other than sporadic Christmas card exchanges many years ago, we’d lost contact. We had the first of many phone calls to catch up on fifty years of living.  She’s a retired clergyperson and I’m a retired psychologist. One of the things she remembers most strongly about our friendship was she and I were “naughty”; e.g., pranking a student teacher, etc. and she didn’t do that with anyone else.  I also remember what we did and it proved helpful in counseling. When students told me “dumb” things they did and got caught for, I could always think to myself that I had done equally “dumb” things but didn’t get caught!  I’m blessed with other long-term friends as well as some who have become better friends during Covid.

                In each friendship, my friend and I have had to navigate how my blindness will affect what we do together and how we do it. At the beginning, that takes my explaining needs; e.g., put things back in the cupboard where you found them. It’s okay to coach me on how to cut the seed out of a mango, but let me do it—don’t do it for me.

 As the friendship proceeds, the blindness stuff becomes less important. Sometimes friends become allies who work on disability social justice projects with me, sometimes not. It’s odd, but the closer the friendship, the harder it is to call the friend out if they’ve stepped on the disability issue.  I may have to caucus with a blind friend to check my perceptions before I do the confronting. Sometimes they give me a reality check that I’m expecting too much of my sighted friend and I may have to go back to explainer mode.  In many ways, I’d rather just skip over it, but to keep the friendship good and deep, I have to do the work.

                If a friend has a disability, I get to learn about their issues as well.  For one friend who was a wheelchair user, that meant I got to push her chair and she got to give me verbal directions. Luckily, she was someone who knew right from left!

                                A line from a   song we sang in Girl Scouts comes to mind: “Make new friends but keep the old. One is silver and the other is gold.” Even during a pandemic, you can reach out and call someone and both of you may well be the better for it. I hope after the pandemic wanes, I remember to value my friends like the treasures they are.

                                                                        by Katherine Schneider

            As more people are vaccinated and mask mandates are dropped in many situations, we’ve got to figure it out again: What will I do, with whom and under what circumstances.

            Recently I was with some friends, all vaccinated and they began hugging goodbye. I froze! I love hugs from good friends but have not been doing that for over a year. Should I start now?  I missed the moment and ended up saying “next time.”

            That little experience made me a believer in FONO, fear of normal. In each situation of deciding on closeness with others, some of whom will be vaccinated and some not, I’ll have to balance FONO with FOMO, fear of missing out. 

             I attended (virtually) a talk on getting back to normal as a guide dog user. Back to busier sidewalks and streets, public dining, etc.  The advice given may be applicable for us all, whether we have a guide dog or not:

  • Think it through ahead of time. As the poet Rilke suggested “from your solitude you will find all your paths.” Try something and monitor your comfort level. If you’re a masker, take it with you, kind of like an umbrella, in case you feel you need it.
  • Take it slow.  Don’t expect it to be perfect the first few times. Social encounters will feel weird.  

If you’re back to in-person work and suddenly need to do chitchat by the coffee maker, you may not know what to say. “How’ve you been?” might elicit a longer discussion than you want. Back to the basics like “So good to see you”!

  • Cut yourself and others some slack.

As Rilke said: “Have patience with everything unresolved in your heart and try to love the questions themselves.”

You don’t know what someone else’s pandemic experience has been and they may be at a different level of risk tolerance from you for a variety of reasons. 

Remember near the beginning of the pandemic, the slogan was “We’re in this together”. We still are.  Even if you’re ready to go back to in-person meetings, leave the virtual meetings, church service, etc. in place for those who aren’t.

  • If you’re having a hard time, talk to a friend, a doctor, a clergyperson you trust. Just talking it through, instead of having the dilemma running in circles in your mind, can help.

Some Ideas for Doing Good, Better

          Joining a new board has gotten me fired up about how badly non-profit boards need members with disabilities! If you’re on a board that doesn’t have 20% of people with disabilities on it, read on and maybe you’ll get fired up too!

             Charity to people with disabilities dates back to Biblical times, but philanthropy involving meaningful input from those served is a recent phenomenon. The demand for “nothing about us without us” is part of the disability rights movement that has been called the last civil rights movement. Major civil rights legislation for the one out of five of us with disabilities – the Americans with Disabilities Act is only thirty years old.

             Recently I joined the board of Benetech, a software for social good nonprofit located in Silicon Valley.  One of their main products is Bookshare, a collection of almost a million e-books for blind and other print-disabled folks. I’ve relied on books from Bookshare for my professional work as a clinical psychologist, as a writer needing to know what’s out there in my genre of memoirs, and as a retiree joining as many book clubs as I can find and glorying in recreational reading.  It’s my joy to be able to support the organization financially but also to add the perspective of someone with lived experience of information access barriers to board discussions.

In addition to the usual steep learning curve of joining any new board with its cast of characters, informal board norms and lingo, I have to articulate my access needs.  I ask for information electronically ahead of time instead of relying on the presenter of a PowerPoint to read it aloud as they present it. The software the board uses is somewhat accessible, but not completely, so we have to figure out how to get me info like what folks are saying in the Zoom chat, which I can’t listen to at the same time as I listen to people talking at the meeting.  I need people to say their names when they speak, at least for a couple meetings, so I can get voices hooked to names in my aging brain.  Staff and board are willing to make these accommodations, but they are awkward and forgetful at times like anyone exercising new skills.

I look forward to when we get beyond people verbally pointing out that they’re accommodating me as in “Kathie, I’ll read this out loud for you” and just do it.  We aren’t to the point yet that I get a laugh when a speaker says “Can everybody see line 3…” and I say “No.” I also hope to develop the relationships with board members and staff to not have them apologizing profusely for a misstep. I’d rather just point it out, they say “oops”, acknowledge discomfort and then go on to try it differently.  I know from my previous 72 years of life experience as a blind person in a sighted world that we’ll usually get to comfortable interactions, but it will take time and work from both the sighted and blind sides of the interaction.

            If this board is like other boards I’ve been on, very few board members have much experience with people with disabilities. They exhibit unintentional ableism in word choices, and saying things like “I don’t think of you as disabled” (meant as a compliment.)   For me it’s a balancing act to decide when to educate about ableism and micro-aggressions (like not providing materials ahead of time even when asked repeatedly to do so) versus just letting it slide.  I will work to get the board to consider board and staff training on ableism and to have another person with disabilities join the board so I’m not the only one doing the educating and representing consumers.

             Eventually, I hope board members think about access and universal design, and question themselves about who’s not at the table and why, wherever they go. When we go beyond just providing lots of books for lots of print disabled folks to having those deep discussions of what information is needed and how technology can help provide it, we’ll be advancing equity, diversity and inclusion in real ways.

 See you in the board room!

            For further information, consider checking out some of the following resources:

Job Accommodation Network https://askjan.org  for reasonable accommodation policies and ideas

National Center for Disability and Journalism www.ncdj.org and National Disability Rights Network www.ndrn.org  guidelines for language and respectful communication

Listen to podcasts like “Power not Pity” and read books like the New York Times anthology About Us edited by Peter Catapano or   Alice Wong’s anthology Disability Visibility to learn about the lived experiences of the one out of five of us who have disabilities.   

                As we dialog about racial, cultural, sexual orientation, disabilities and all the other kinds of differences we have, I often hear a comment like “I don’t think of you as blind.” It’s meant to be affirming, but it makes me afraid and mad.

                If you don’t think of me as blind, you’ll:

  • Invite me to a silent movie with no audio description
  • Not tell me if I have a spot on my blouse
  • Not tell me about the “wet paint” sign where I’m about to touch the wall…

                Saying you don’t notice, feels to me like gaslighting, saying my reality isn’t really real. Hopefully, it’s not the only thing you notice, but please go ahead and notice.

To me, noticing my difference and taking it into account as we do things together is a better way than not noticing it. I don’t expect you to know everything about how the difference affects me, but I hope you have enough empathy to take some guesses and ask when you wonder.

  It’s fine to be curious, especially if you’re putting some effort into the friendship and you’d be okay with me asking you a similar question.  For example, if you want to ask “Do you wish you could see?” is it okay for me to ask you “Do you wish you weren’t Black sometimes?”

                Pretending we aren’t different on the sight dimension of life, leaves me trying to pretend I’m sighted which takes a lot of energy and is bound to fail.

  I’m happy if you don’t think less of me because of our differences, but please notice, be naturally curious, empathize and enjoy sharing your world.  If you tell me about that beautiful blooming bush you noticed on your walk, my world will be enriched.  Unless it smells, I may be walking by it and not even know it’s there.

 When differences are okay to talk about, I can enrich your world too. You can talk about what blue jays look like and I can tell you they squawk a lot when it’s going to rain. Most sighted people are too busy looking at them to listen.    

                If you mean “I don’t think of you as inferior”, thank you.  Please help rehab disability words like “blind” and “lame” so they don’t equate to “ignorant” and “insensitive.” When you catch someone saying “blind to their pain”, ask them if they meant “ignoring their pain.”

                When we’re comfortable enough to laugh about our differences and misperceptions of each other’s worlds, life is indeed richer.  As a sighted friend used to say: “Just because I can see, doesn’t mean I see.”

                                                             

                Recently I went on the board of Benetech which operates Bookshare, the largest electronic library of books for blind and print disabled people.  The bumps in the road of onboarding say a lot about the state of inclusion for the blind in ordinary life.

                Benetech is a medium-sized nonprofit whose mission is “to leverage technology and innovation for social good.” It’s been around for twenty years and its crown jewel is a huge online library of downloadable books for borrowers with print disabilities.  Because it’s all online, best sellers are likely to be available the week they appear on the print best seller list. Sometimes my sighted friends have to wait for a print copy from the public library and I get to download and read it before they do. As someone who’s had the opposite for sixty years, it’s kind of fun to be the first to read a book.

                When finances permit, I contribute to Benetech. This year it occurred to me that I’d make an ideal board member because I’m a satisfied customer, a donor and I have a lot of varied board experience.  After submitting my resume and interviewing with three board members, I was elected.  Then the culture shock and access issues hit.

                All the board members except me are denizens of Silicon Valley and work in tech businesses there. They use Google drive, docs and sheets and Board Effect software.  Are these platforms accessible to those of us who use screen readers? I’d say “yes” at a “C minus” level.

                First, I tried just using my common sense and managed to garble a Google document we were supposed to comment on without knowing I had messed it up.  Luckily one of them knew how to put it back the way it was.

After having a meltdown about embarrassing myself the first day, I did lots of Internet research for keystrokes to use instead of pointing and clicking like sighted people do.  The key combinations involved punching up to four keys at once and about half of them worked and half didn’t.  Then I called tech helplines for my screen reader and for Google. One sweet young lady told me I sounded just like her mother expressing frustrations with technology. “Mother, heck!” I thought to myself—grandmother is more like it.   Unfortunately, Google’s disability phone help line was temporarily turned off for English, although Portuguese was still available.

                Finally, I got a recommendation of a consultant and hired him for a month.  He’s blind and has done tech help for blind people for twenty-five years. I was pleased that he tried many of the things I’d tried that didn’t work for me and they didn’t work for him either.  Whew! It’s not all me!  But what he knew that I didn’t was if this doesn’t work, try that.  After about an hour of phone help, I think I can do what I need to. Now I just have to screw up my courage and do it. 

                I can tell I will add some lived experience from a customer perspective to board discussions. I will probably offer to do disability awareness training for board and staff, if desired.  The organization prides itself on promoting equity, diversity and inclusion but has not thought a lot about it from a disability perspective.

                As Einstein said “Failure is success in progress”.  Clearly, I’m on the road to success with my new venture with the folks of Silicon Valley!

                Freud said the good life was being able to love and work. I’ll add “play and pray”. Looking at life in these areas one year after the start of the pandemic, I’ve come up with the following thoughts:

                                                                                                Work

                The main difference in how I work is Zoom!  I attend meetings, book clubs, and informal gatherings by Zoom on the computer or other inaccessible platforms by phoning in. I don’t have to get dressed up or figure out transportation, but sure miss the little side conversations at in-person meetings. Sighted people seem to be having more trouble without as many visual cues about when someone is done talking, etc. I’m used to that and to projecting a friendly high energy persona because I can’t make eye contact.

                Bringing home, a new guide dog right before the pandemic hit has meant acclimating him to my lifestyle.  When things open up, sitting quietly under a restaurant table, being close to other people without getting distracted, and other in-person skills will have to be refreshed for both of us! 

                The new normal of getting groceries delivered, mostly works. I do miss cruising down a grocery store’s deli aisle figuring out what pre-made items I’d like to get, instead of ordering ingredients each month to make what I hope I will want to eat. 

                                                                                                Love

                I’ve become very aware of how important friends are to me.  I arrange phone chats and distanced walks to keep connected.  I miss lunches with friends a lot.  Pauses to think about what to say next are easier when munching on eggrolls than when sitting on a phone call.

                I also miss hugs! Luckily my Seeing Eye dog tolerates cuddling, belly rubs and loves to lie on top of me.  Talk about a weighted blanket!

                                                                                                Play

                There’s definitely more time for hobbies, but not nearly enough time to make even a dent in my TBR list. I’ve done my first binge reading of a series: The Timber Creek mysteries by Margaret Mizushima.

                                                                                                Pray

                When the pandemic hit and the churches shut down, I felt abandoned by church, God and everyone in between.  We elders were told that even if there were in-person services, we didn’t have to come and please don’t. This was clearly right, from a disease-spread perspective, but there was no encouragement to please pray, check on neighbors by phone and stay connected.  Eventually Zoom and other online services were offered and some opportunities for individual communion in some parishes.

                The new normal in churches made me realize what I got from church.  For me, the biggest thing was community with other believers, especially in song and in person (shaking hands, laughing together in the back row, etc.) As a blind person hearing that 123 other people are tuned in to a streamed service just doesn’t feel like community to me.

                Needless to say, my prayer life has been rocky; lamenting like Job and the psalmists, and clinging to the hope that God is with us. On good days I step out in faith to push for a parish calling program or work on a mailing for Inclusive Ministry Church which can’t meet in person for the foreseeable future. On not so good days, I sulk and sing “Nobody Knows the Trouble I’ve Seen” to myself and kind of forget the “but Jesus” part of the song. Praying prayers of gratitude at the end of the day helps remind me that I am a beloved child of God and have been shown that in many small ways all day.  Church potlucks may be a thing of the past, but maybe someone just dropped off some lefse.

                May you’re coping and hoping continue as we move forward!

In our Covid-19 world, I sure miss sharing hugs.  Maybe that has heightened the enjoyment I’m getting from sharing ideas.  A few examples to get you going!

  • A tweet commented that as an adult, nobody asks you which dinosaur is your favorite anymore. So of course, I asked the tweeter and she replied in kind. This led me to do a little Internet research and learned that two thirds of dinosaurs were vegetarians—including my favorite stegosaurus. 
  • For my question of the day for my Covid-19 buddies on Pluto day, I asked them if they missed Pluto as a planet. Three out of four could care less, but one person agreed with me that it was a bum rap and even sent a link to a song about it: https://youtu.be/loHgvX96J-0

A friend who teaches middle school science will be teaching the planets soon, so was delighted to get this song to add to her virtual lesson.

  • Preparing to lead a discussion for a book club of Legacy of Spies by le Carre, I did background reading on the genre of spy fiction.  Made me wonder why so few women write these books.  I asked a friend who is a retired librarian and a fellow booklover what she thought.  She said the popularity of James Bond-type spies with female characters being used mainly as honey traps, put off women writers. But then she came up with a list from The Guardian Literary section for me to try:

Gayle Lynds, (maybe a contemporary of Stella Rimington)

More contemporary:

A treachery of spies by Manda Scott (sometimes uses the name M. C. Scott)         

The most difficult thing by Charlotte Philby who is Kim Philby’s granddaughter

The secrets we kept by Lara Prescott

Killing it by Asia MacKay

The African Affair by Nina Darnton

The Cutout by Francine Mathews

Wolves of Leninsky Prospekt by Sarah Armstrong

American spy by Lauren Wilkinson. 

A quiet life by Natasha Walter. 

Then there are these three by women authors who don’t normally write spy novels.

Transcription by Kate Atkinson

Exposure by Helen Dunmore

Black Water by Louise Doughty

  • Getting ready for a reading with three other local authors of nature/animal-themed stories meant helping integrate American Sign Language interpretation into the performance. What to do about signing the musical interludes between the pieces? Check us out by registering free for the performance “All Creatures Great and Small” at the Pablo: REGISTER – FREE!

                                                     

                I was discussing fiction containing disabled characters with some very literate friends. The discussion broadened to who should write what fiction.

                American Dirt by Cummins is a great example of this issue.  Does the author’s Puerto Rican grandmother give her enough cred to write a Latina refugee story?   Does her intention to “be a bridge” and give readers empathy for the migrant experience make it legit? Does being chosen for Oprah’s book club give it credibility?

                One critic called it “trauma porn that wears a social justice fig leaf.” Huge sales underline the popularity of issue fiction like American Dirt and The Help. But both authors are white and describing people of color’s thoughts and feelings from that vantage point. Cummins has sometimes said she is “white and Latina”, but doesn’t always mention that.

                How the book is marketed may also be important. If it’s a thriller and is indeed thrilling, stock characters may be okay. If it’s supposed to exemplify the “immigrant experience” then one-dimensional tone-deaf characters decrease its legitimacy.  They simply perpetuate stereotypes at best, and bathos at worst. Because of this concern, some publishers are now hiring “sensitivity readers” to give books a sniff test.

                For readers and book clubs trying to figure out whether to spend their precious reading time on a book, consider the following:

  • Does the writer inhabit the world he/she is writing about? If not, how extensive is their research?
  • Are there multiple diverse characters or just one?  Is that character multi-faceted or just a Deaf villain or a blind woman “damsel in distress”?
  • What do reviewers of the ethnicity, disability or other minority featured in the book say about it? If you can’t find a review by someone from the minority group, ask a friend from that group what they think.  You want to be sure that your empathy gained from the read is for the “real” situation of characters, not for a phony situation.
  • If you choose to discuss a popular book, even if it is getting mixed reviews by authorities.  Mention the critics’ points.  This can help move readers toward real empathy while meeting them where they are, wanting to read what everyone else is reading.

                Enjoy good reading!