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!

                                    

          As we finally get ready to bid adieu to 2020, I did a non-random survey of friends to see what good we could salvage from a tough year.  Turns out people found a lot of positives like the following:

1.  Getting to know neighbors, neighbors’ dogs, etc. (at a safe distance of course)

2. Cleaning out storage rooms and finding treasures: As one family history buff put it: “I’ve   been digging, digitizing, documenting, and distributing.  Favorable family responses have brought me to tears many times.  As I sorted and shared, I, too, was enriched and enlivened as my family members from former years related their life stories.  Surely, all were pandemic survivors who had moved on with faith and hope. Their experiences said again and again to me: You will survive, too.”

3.  Being more creative about connecting with relatives and friends: coloring together over Zoom, family book groups, etc.

4. More attention to healthy eating, cooking, inventing recipes and dining together.

5. Having so many wonderful sources of culture, entertainment and news online. People became more discerning about media use.   

6. Learning to develop forgiveness toward persons whose political, COVID-19 mitigation attitudes and actions differ so widely. As one meme says, we are learning to allow them their right to be wrong even when they may not be returning the favor.

7. Reading more and listening to more podcasts about a wider variety of topics.

8.  Taking time to do home improvements and home beautification: from replacing sump pumps to adding a new quilt to the décor. Also discovering what you can do for yourself, if you have to like kids’ haircuts. 

9. Becoming more intentional about prayer and worship because we can’t do it the same old way. Online church attendance went mainstream.  As a pastor friend pointed out, it was a great year to invite people to church because they didn’t have to dress up and feel awkward about going to a new place where they might not know anyone. As he said: “just at the time when people felt the need for spiritual comfort, we accidentally stumbled into a new way to do church that made that comfort accessible.”

10. Spending more time in nature: bird watching, etc.

11. Accommodations like attending meetings electronically, grocery deliveries, etc. originally just for people with disabilities became commonplace and saved people time and effort.

12. Learning that there is joy in a simpler schedule with less rushing around to activities and events.

13. Realizing the importance of community: people remained giving to charities at high levels even with an economic downturn. Many acts of individuals helping neighbors and family were noted.

14.Thinking more about gratitude, priorities and learning things about themselves. As one woman said: “No matter how low, how defeated, and how lost I have felt, I have the inner strength to push through, persevere and continue to grow. I have learned that I am stronger than I ever knew. I learned that I will be ok.”

15. To end on a lighter note, The Literary Review, a British literary magazine, announced that it will not be awarding its annual Bad Sex in Fiction award in 2020.  Said the editors: The judges felt the public had already been subjected to too many bad things this year to justify exposing it to bad sex as well.

The editors went on to say that they anticipate a rash of entries next year as lockdown regulations give rise to all manner of novel sexual practices.

          Farewell 2020!

Celebrating International Day of Disabled Persons December 3, 2020

          I started celebrating IDDP by posting the following on social media and emailing it to friends:

           Today is International Day of Persons with Disabilities. Celebrate with this Helen Keller quote: “Alone we can do so little; together we can do so much.”

How will you celebrate?

          I got back wonderful answers ranging from making a contribution to a disability-related organization, to lifting a glass of some libation of choice with a family member who has a disability.

Normal life of course goes on, even on IDDP.   One friend is doing a 24-hour urine collection today to further the diagnosis of their chronic condition. I got groceries delivered and had to call the store because of missing items. They said they were sorry and delivered them.  Apparently so many more people are using the service nowadays and they don’t have more storage space.   My last bag just got lost in the cold storage.

          Another friend informed me of a new program at the Minneapolis airport she plans to use next time she travels: “The Hidden Disabilities Sunflower program, which is designed to ease travel for people with disabilities, has arrived at Minneapolis-St. Paul International Airport. The program got its start at London’s Gatwick Airport in 2016.   Travelers at MSP can now pick up a sunflower lanyard, which indicates to airport staff that the person may need assistance or extra time to navigate the airport. 

          The sunflower lanyard signals that someone may need more help for a host of reasons including low vision, hearing loss, autism and post-traumatic stress disorder.  Passengers should still arrange for assistance with their airlines if disability services are needed.” 

          I led a book discussion of The Great Believers by Rebecca Makkai about the AIDS epidemic in Chicago in the ‘80’s.  Its themes of finding goodness in disaster and compassion of chosen families vs. distance in birth families, resonate in the wider disability community.  It is a novel full of both sadness and hope, which rings true in my disability world.  People dealing with a pandemic in 2020 may resonate with it too.

          Calvin entertained me with several games of chase as well as a nice walk around our neighborhood.  After book club we wound down by sharing a banana and me drinking eggnog.  Then off to bed with a thriller and thoughts of how the good life is doable with disabilities included, if we all do it together.

                One of the few good things to come out of the pandemic for me has been increased awareness of the importance of friendships in my world.  As a single person, I could be lonely, sheltering alone, but because of friends, it’s been doable.

                Friends come in many varieties:

  • The Facebook friend who shares something with me they know I’ll enjoy
  • The long-term friend from work forty years ago who writes about a letter a week
  • The small squad of friends who pick up take-out food and bring it over for a backyard picnic.    The friendship started with one person who then introduced me to others, so my web of friends now includes the whole squad.
  • The friend living in assisted living who puts forth the effort to carry on a conversation when I call her even though her word-finding skills are in decline
  • The friends who drop off a serving of dinner so I get someone else’s cooking occasionally.

                All of these are examples of the shine theory; e.g. I invest in you and you in me to promote each other’s best selves.

                Then there are the friends who stretch me by sharing their worlds that are different from mine; they are a CEO, a Conservative politically, and a person living in assisted living who can’t leave his room… When I listen to them, my views of issues are challenged and my world enriched.

                Friends are chosen family. Earlier this year a friend I knew forty-five years ago stopped by. Our conversation effortlessly switched from ‘what are you up to these days?’ to our activism back in grad school days.  The knowledge that someone has known me through ups and downs, and still comes around, warms my heart in this time of social distancing.

                All of these friends were around before COVID, but as in-person opportunities to be with friends have decreased, I’ve focused more on how I can tend the friendships and strengthen them. Four single friends have become my pod that I check on daily. I’ve come to know much more about their lives just because of the daily check ins.

                In some cases, to bring the friendship to a deeper level, I’ve had to confront a difference; e.g. the effects of my blindness on the friendship.   In their excellent book, Big Friendship, Aminatou Sow and Ann Friedman
    

talk about this difference (for them a racial difference) as a trap door in the friendship.  To me it feels more like a switching point on a railroad.  If I don’t confront the ableist comment or misunderstanding, eventually, the friendship will switch on to a more casual track.  If my friend can’t hear my rage at an insurance company who suddenly won’t accept my stamp as my legal signature and wants me to get a doctor’s note stating I’m blind, without trying to justify their stance, they become a friend I can play with but not emote with.

                At first in a friendship with a sighted person, my blindness may be a big deal. How do we walk together? What activities are sharable and what not? etc. My tech devices and ways of doing things may seem exotic and I spend energy doing public education. But, if we get through the initial blindness etiquette phase, the blindness fades to just being one facet of who I am.

  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.

                                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.  

New Book, New Computer and Marketing During COVID; Oh My!

            It’s finally published after seven years of blogging and a year of revising! Hope of the Crow: Tales of Occupying Aging has flown the nest.  The blogs are grouped into four sections: work, play, love and pray.  They range from the practical, like tips for sighted people in general when around a blind person, and medical professionals in particular, to the humorous like “Mercury and I are in Retrograde” and “Sighted People are Strange”.

            In case you’re wondering why the title, Hope of the Crow, crows fascinate me.  They’re smart—the females make and use tools.  They survive and thrive in many environments, which gives me hope in these turbulent times. They can’t sing (neither can I), but we still try to caw out our hope somehow.

            I wrote the kind of book I like to read—full of glimpses into life (the ups and downs of the life of a disabled elder activist), in this case. Half the people over sixty-five will develop a disability, so I want to share a few tricks of the trade and give some realistic hope about the good life still being achievable. Of course, there are dog stories about my Seeing Eye dogs and stories like “Breaking Bubbles” about the remarkable humans that surround us all.  I even included two poems I wrote, “An Anthem for the Americans with Disabilities Act” and “Hope of the Crow”.

            I published the book this year, which is the thirtieth anniversary of the Americans with Disabilities Act, on purpose. This book is the living out of the ADA. The one out of five Americans with a disability still has to seek access, but there are gains to savor.  The fact that I survived two days without a computer (gasp!) while my new one was being built by using my talking iPhone is a good example of both how far we’ve come and how far we have to go.  The professional who sold me the new computer and set it up couldn’t just give me a loaner while he was working on it because it wouldn’t have talked like I need. 

            Between computers I whiled away my time on Facebook and noticed that many of my Friends describe their pictures instead of just posting them, so I can enjoy them too.  A great example of ADA done right by individuals quickly and cheaply.

            Now it’s on to marketing! I can’t do the usual book signings because of COVID, so am looking for new ways to market. I did an initial salvo of e-mails and a Facebook post.  This netted me many wonderful warm wishes for the success of the book and one solicitation for big bucks for a worthy local cause.  Clearly at least one person believes Hope of the Crow will have me rolling in money and cawing a sweet victory song! May it be so!

               

“I don’t know Joan Chittister, but she knows my soul.  Read this quote from For Everything A Season, by Joan Chittister and see if it describes you too:The function of each succeeding generation is not to demand change; it is to prepare for it. Even in the face of the impossible, we must act as if the miracle will come tomorrow.  That’s what sowing is about. It requires trying when hope is thin and faith is stretched and opposition is keen. Sowing is a tedious task whose enemy is the need to succeed. Tedium exhausts the person of ideas. Telling and retelling the idea to hostile audiences and skeptical friends and outraged neighbors and traditionalist congregations and heartsick families takes its toll on the spirit. The spirituality of the sower, then, is the spirituality of urgent patience.   They demand for now what others do not even know is lacking.”

                This week both my patience and my perseverance were rewarded: my book of blogs Hope of the Crow: Tales of Occupying Aging was published in paperback and Kindle formats.  Through a lot of work, it was added to Bookshare, a downloadable source of e-books for the blind and print disabled the same week.  The researching and writing were fun; the editing and getting ready for publication—not so much. 

                But the moral of the story, at least today is patience and persistence pay off, at least sometimes! 

                Here’s the promo in case you want to ask your library to buy a copy (hint, hint). Drop me a line and tell me what you think. 

PRESS RELEASE

September 1, 2020 _________________________________________________________


                        Hope of the Crow: Tales of Occupying Aging

Eau Claire, WI – Just in time for the 30th anniversary of the Americans with Disabilities Act, author Katherine Schneider offers an honest, instructive, hilarious memoir of seven years of aging and advocating told in blogs. Chapters cover loving, working, praying and playing and include subjects like: “What If Wonder Woman had a Disability”, “Breaking Bubbles” and “Sighted People Are Strange”.

Read Hope of the Crow and you can dig deep within yourself and retrieve your own power and sing your own victory song.

            Hope of the Crow is available from www.wheatmark.com and online outlets. It is  available in accessible format from www.bookshare.org