The last time I climbed on this soapbox was about the story on public radio about echolocation. Now Radio Lab has a story about a gal seeing with her tongue:

To me both these pieces make us blind folks look like freaks, or at best “interesting specimens”. I get the fact that media does not report on normal people doing normal things, but this makes me worry. If you were an employer, would you hire a blind person to teach, do your taxes, run your nursing home, etc. if these images were all you knew?

Contrast them with my journal of my weekend:

I think fall is my favorite season in Wisconsin. Summer and spring are runners up however. Take this weekend for example:

I went to some friends’ house to help make cider, taking some of my own apples to put in the mix. First the apples go through a bath to sanitize them and someone cuts out any bad parts. Then I got to feed them through the press which was a two stage process. The first stage was grinding and the second stage was pressing. Actually there was a pre-stage which was convincing my friends that I could safely feed apples into a grinder powered by an electric motor! In addition to the cider, pomace (apples minus the liquid) was produced. The pomace will be fed to the friends’ goats so nothing is wasted. Imagine standing outside on a sunny crisp day, joshing with friends, pressing and then drinking cider. The good life indeed!

Saturday was full with grocery shopping with another friend, a nap, and Mass. The first week after I do my monthly shopping is full of wonderful fresh choices, so supper was eggroll, sushi and cukes in cream. In addition to getting to watch several babies in church, my guide dog was rewarded with a chew stick after Mass. She knows the drill so well she comes home from Mass about twice as quickly as she goes to Mass.

On Sunday, there was the usual brunch with another friend who reads the week’s cartoons to me in trade for my cooking brunch. Some must cook and some read! Then in the afternoon we took my retired guide dog and my active dog to the Blessing of the Animals in honor of St. Francis Day. Afterwards two dogs and three humans enjoyed treats.

A weekend full of fall, friends, food and frolic. More reliance on friends to help accomplish tasks than if I could see possibly more enjoyment of sounds, smells, and kinesthetic cues than if I could see. Not as exotic as “seeing with your tongue” or echolocation, but much more typical of life for typical blind people. I wish these realities of life as a blind person were on NPR and other media outlets so that when somebody thinks of becoming blind o r hiring a blind person they’d have them in the back of their head as well as the tongue-clicking, “seeing with their tongue” images. It would make their lives easier!

September 27 starts “Banned Books Week” this year, sponsored by the American Library Association.

“The ALA promotes the freedom to choose or the freedom to express one’s opinions even if that opinion might be considered unorthodox or unpopular and stresses the importance of ensuring the availability of those viewpoints to all who wish to read them. A challenge is an attempt to remove or restrict materials, based upon the objections of a person or group. A banning is the removal of those materials. Challenges do not simply involve a person expressing a point of view; rather, they are an attempt to remove material from the curriculum or library, thereby restricting the access of others. As such, they are a threat to freedom of speech and choice.”

Choice and availability of information are close to my heart. When books are not available in alternate format, my choice to read them is severely restricted.

But I also understand the urge to ban, or at least strongly recommend others not read a book. When I don’t like the way a blind character is portrayed, as in All the Light We Cannot See or others don’t like Atticus Finch being portrayed as a racist in Go Set a Watchman it’d be easy to say “Ban it!” It takes more time and energy to articulate why we don’t like it and what we’d recommend instead. But that approach can lead to some fruitful discussions when others push back.

Just in case you’re wondering, here’s the 2014 list from the ALA’s website:

  1. The Absolutely True Diary of a Part-Time Indian, by Sherman Alexie
    • Reasons: anti-family, cultural insensitivity, drugs/alcohol/smoking, gambling, offensive language, sex education, sexually explicit, unsuited for age group, violence.
    • Additional reasons: “depictions of bullying”.
  2. Persepolis, by Marjane Satrapi
    • Reasons: gambling, offensive language, political viewpoint.
    • Additional reasons: “politically, racially, and socially offensive,” “graphic depictions”.
  3. And Tango Makes Three, by Justin Richardson and Peter Parnell
    • Reasons: Anti-family, homosexuality, political viewpoint, religious viewpoint, unsuited for age group.
    • Additional reasons: “promotes the homosexual agenda”.
  4. The Bluest Eye, by Toni Morrison
    • Reasons: Sexually explicit, unsuited for age group.
    • Additional reasons: “contains controversial issues”.
  5. It’s Perfectly Normal, by Robie Harris
    • Reasons: Nudity, sex education, sexually explicit, unsuited to age group.
    • Additional reasons: “alleges it child pornography”.
  6. Saga, by Brian Vaughan and Fiona Staples
    • Reasons: Anti-Family, nudity, offensive language, sexually explicit, and unsuited for age group.
  7. The Kite Runner, by Khaled Hosseini
    • Reasons: Offensive language, unsuited to age group, violence.
  8. The Perks of Being a Wallflower, by Stephen Chbosky
    • Reasons: drugs/alcohol/smoking, homosexuality, offensive language, sexually explicit, unsuited for age group.
    • Additional reasons: “date rape and masturbation”.
  9. A Stolen Life, Jaycee Dugard
    • Reasons: drugs/alcohol/smoking, offensive language, sexually explicit, and unsuited for age group.
  10. Drama, by Raina Telgemeier
    • Reasons: sexually explicit.

I’ve only read two of them; guess I’d better get busy!

Did you know that September is National Service Dog Month (formerly National Guide Dog Month)? Instead of focusing on all the noble things my guide dogs have done over the last forty-two years, I’d like to tell you a funny story about the life of a service dog when the harness is off.

Sometimes people are surprised that these intelligent creatures that we’re lucky enough to be partnered with are real dogs in their off duty time. My guide dog was showing her Labrador heritage (see food, eat it) by licking plates as I put them in the dishwasher this noon. Gross if you’re not a dog owner, but they do get washed and sterilized, trust me! Somehow the bottom shelf of the dishwasher started rolling out of the dishwasher, turned a ninety degree angle and chased her from the kitchen into the dining room as she retreated in horror. Plates and silverware bounced out in all directions. She ran to the front door of the house and stood stock still in horror and apprehension. After I cleaned up as many dishes and utensils as I could find I went to talk to her. I think she expected a scolding, but I didn’t give one because the unintended consequence of being chased by a rogue dishwasher shelf had taught her far more than I could cover in a lecture. As time passes she’s walked by the evil machine but has showed no interest in pre-rinsing the supper dishes.

So celebrate National Service Dog month with us. Whether you’re a puppy raiser, a contributor to a service dog school, or an observant driver who pauses so we can safely cross a street, thank you.

As often happens, the newest version of an app doesn’t work well with Voiceover. The August 12 update of Trivia Crack randomly bounced you out of the app if you used Voiceover, as blind users must.

There are not a lot of mainstream games on the iPhone that blind people can play, so this one is very popular with us. Since it’s also a very popular game with sighted users, it gives us a common bond. I admit I’m hooked; I’m at level 155. I regularly play about ten people, eight of whom are sighted. My opponents range in age from eighteen to eighty.

When version 2.2 installed itself and then crashed every time I opened it with Voiceover on, I sent a comment through their website and got back an automated response that they’d be in touch soon. I checked and several other blind Trivia Crackers had experienced the same problem. I found Trivia Crack on Twitter and tweeted them. Then I Facebooked and asked Trivia Crackers, whether they use Voiceover or not, to complain.

I also sent the message to several lists of blind people and sent story ideas to wired Magazine and the BBC’s and NPR’s tech programs. I wanted to raise a mighty chorus! Apparently it wasn’t a story that tech magazines or tech shows found compelling. I think it’s hard for sighted people to realize how few choices of games we have since they’ve never had to think if a game is accessible. Users of Apple apps can’t go backward to the last version that was accessible.

No word came from the developer–not surprising to this cynic. In desperation, I called Apple Cares line and lodged a complaint. The gal I talked to thought if they get a lot of complaints they might reach out to the developer. I updated my lists and Facebook page with this message: “Call Apple Cares to complain. Their number is 800-275-2273. You’ll have to go through giving them your IMEI number and your phone number, etc. It takes about five minutes. Maybe if we work together we can stir up interest in fixing this.”

After two weeks I contacted a lawyer who specializes in disability rights, access issues, etc. and said I might be willing to pay for a couple hours of his time to write a letter to the developer. I’d think a legal letter would be worth paying attention to. After I found out it would cost me $400 to nudge them about access, I decided to wait. And wait… Stay tuned!

I decided for unknown reasons that I should complicate my online life by becoming a tweeter. In case you’re reading this blog because of the “almost virgin” part of the headline, let me explain! I tweeted once in 2009 so I could say I’d done it, but never went back until now. My handle @schneiks was still there waiting for me.

As is my style, I did serious research including reading several books on twitter from Bookshare and taking a Hadley class on social media. Then I dove in and followed 70 organizations and individuals in the first week.

Hadley School for the Blind ( is a free correspondence school for blind students worldwide. Since they didn’t have my records from when I took German 2 from them fifty years ago, I had to re-register and prove I was blind. My guide dog’s picture wouldn’t do, so I had my friend who is the disability services director on campus write a note (on letterhead) saying that to the best of her knowledge I was blind. The course is a three lesson overview of social media with emphasis on Facebook, LinkedIn and Twitter. I found myself arguing about a multiple choice question (some things never change)! I did get some good info from the instructor. It also gave me that push to research and think about what role Twitter should play in my social media portfolio.

At first I’m just reading/lurking and occasionally re-tweeting. Somehow it’s easier to say more, as on Facebook, than to limit oneself to 140 characters. I’ve picked up a few followers from disability connections and friends. The majority of my followers are folks selling something from “a younger you” to porn to strange kinds of healing. Apparently if one doesn’t follow them back, they’ll eventually go away. I have used a couple tweets to start Facebook discussions like the fact that August 9th was booklovers’ day.

According to an author on Spokal for business owners, businesses (and presumably nonprofits as well) should: Blog 2x a week, Facebook 3x a week, and Tweet 5x a day. Huffington Post and the New York Times are definitely doing this and more in their tweets. Since I want to have an off-line life too, I reluctantly un-followed them after a day.

The sighted gal who reads to me easily set up my account, choosing a theme, importing a picture, etc. The only disappointment was the background of crows she thought she could choose just wouldn’t stay chosen. Just because you’re twenty-something doesn’t always mean technology works perfectly for you!

In my search for organizations to follow, I looked for blindness/disability groups, writers I like to see how much working writers tweet, and aging gracefully individuals. I also looked for tweeters who took their religion and/or their disabilities lightly. The picks so far in the humor category are @blindonion and @unvirtuousabbey. Your recommendations are welcome! Finding good stuff on Twitter seems like drinking from a fire hose; lots there, but you could drown. One thing I’d change if I were Queen of Twitter, I’d not let people tweet the same thing every two hours. Apparently people glance at their twitter feed, so the hard-core tweeters want to be sure you see their tweets in a glance so they keep rebroadcasting them.

I’ll leave you with a few favorite tweets I’ve found so far from @inspire_us:
“If the whole world was blind, how many people would you impress?”
“Do what you feel in your heart to be right for you’ll be criticized anyway”—Eleanor Roosevelt
“We are all lying in the gutter but some of us are looking at the stars.”—Oscar Wilde “The way I see it, if you want the rainbow, you gotta put up with the rain.”– Dolly Parton

ADA was well observed by the media including both local newspapers. There were many fine editorials by people with disabilities about the 25th anniversary of the ADA. It was fun to see if the luminaries quoted were people I know from advocate listservs. In one case it was. Steve Brown’s editorial referred to some of his poems:

In the “what’s left to be done” category, it’s particularly ironic that on Parents’ Day (also July 26 this year), there are 35 states in which a child can be removed from a parent’s custody due to the parent’s disability status alone.

Now that ADA 25 has been celebrated and pronouncements have been made, it’s time to get back to regular life.

Maybe this post should be called “Monday after the Miracle” like William Gibson’s sequel to The Miracle Worker. In it, Helen Keller has started a successful writing career with the help of her teacher, Anne Sullivan. She must struggle to adjust to Sullivan’s marriage to John Macy and her own emerging sexuality. Monday after the ADA anniversary, the 19% of us with disabilities go on with our lives too, day by day.

I just got done fixing my landline which wasn’t working by talking on my cellphone with a SIRI-like automatic program and aided by a sighted person telling me what color various modem lights were. The sighted friend had to trot up and down stairs and answer my questions. SIRI voice at one point chastised me that I should talk only to her because “she could hear everything and was getting confused.” Apparently she hadn’t considered I might need to ask the sighted person for relevant info. Then when we did fix it, I wanted to hang up and it took us about three minutes to figure out how to end the call on the cellphone; she didn’t want to part with us. If I was a comedian I could do a great skit of it with the sighted person trotting up and down the stairs to answer questions and plug and unplug cords on demand. Progress!

The pizza party and sculpture tour to celebrate the 25th anniversary of ADA was another good example of every day ADA. I had to change the default temperature on the oven to 425 degrees to cook the pizza. I thought I had learned what buttons to push on the flat screen to do this, but apparently not. So three PH.D.s were trying to figure it out without the manual which we couldn’t find. One friend and I went online but she couldn’t read the fine print because her reading glasses were at home. The other gal stood by the stove pushing buttons, supervised by the two dogs who would have gladly eaten the pizza raw. Somehow she got it working. The pizza was excellent, the sculpture tour was fun and we laughed together about technology. Thank God for friends both two- and four-legged.

Here’s a week’s worth of little ADA encounters. Some are home runs and others show implementation of the law is still a work in progress, even after 25 years.

  1. I approached two priests I know and got both to agree to say a prayer of petition at Mass: “For individuals and families living with disabilities that they be strengthened for their challenges and for those who work for inclusion and justice for people with disabilities”. Then I emailed a couple listservs of blind Catholics to encourage others to do likewise. Even if I couldn’t seem to get anything going nationally or at the state level about the Catholic church celebrating ADA 25, a couple local parishes will talk about the needs of the 19% for strength and allies.
  2. After 25 years my stove gave up the ghost so I’m the proud owner of a new one. I did get burners instead of a flat top so I know where to put the pans without burning myself. But the only style available has a flat screen for oven controls and no overlay panel with dots for strategic points like bake, start and stop. So I put bump dots (available at hardware stores) on. One of the marker dots on the oven controls already fell off after three days, probably because of the heat. I now have to guess where stop/clear is. Shouldn’t manufacturers be required to provide overlays?
  3. A friend reported on bus and other ADA accommodations at a big outdoor concert here. She said that her needs, including bringing in a chair when others had to stand, were cheerfully met.
  4. I got good customer service from the university’s computer help desk about Outlook not working. They coached effectively when I explained that I used a screen reader instead of freaking out like happened ten years ago. It’s wonderful to be able to use mainstream support instead of having to wait for the ADA person (if there is one) to call you back.
  5. Nike is producing a new shoe you can put on with one hand I read in the news.
  6. At the ADA Anniversary Proclamation at City Council (my short remarks about access improvements in Eau Claire were brilliant. However, the show was stolen by a Leader Dog in training who made a couple very short cogent remarks). An Ally who went to City Council with me had pics Facebooked before the sun set.
  7. The new book by Harper Lee appeared on Bookshare the same day it came out in print.
  8. There was a Dear Abby letter about what wheelchair users should say to rudely curious strangers:

On the actual anniversary day I plan pizza with friends and a tour of some of the sculptures on our city’s sculpture tour: You can’t beat good food, good friends and good fun! Happy ADA 25!

Sen. Tom Harkin Ret. sums it up well: “Twenty-five years ago the passage of the ADA affirmed the foundation of civil rights for people with disabilities. We have been building an accessible society on that foundation for the past two and a half decades. Like any other foundation, it is what is built on top of it that is important in our daily lives. The civil rights ensured by the ADA can only be guaranteed if we are vigilant about protecting them. As we move forward into the next quarter century of the ADA, let’s all pledge to protect those rights in all parts of our lives. Onward!”

So what’s happening in the lives of people with disabilities twenty-five years after the Americans with Disabilities Act was passed? If one judges by memoirs, people with disabilities and their families are moving along in society, facing and sometimes prevailing against the architectural, communication and attitudinal barriers the ADA was passed to help ameliorate.

Life is Short; No Pun Intended by J. Arnold and B. Klein chronicles the life experiences of the stars of the “Little Couple”. They adopt children, deal with cancer, and strive to make the world a better place. In Tripping into the Light, Charlie Collins works to overcome the low self-esteem he’s had since childhood because of his blindness. His narrative talks freely about his drug and alcohol issues as well as his blindness. In Every Day You Fight, Stuart Scott and L. Platt chronicle Scott’s fight with cancer. This ESPN anchor believed you beat cancer by “how you live, why you live and the manner in which you live”.

Life in the balance: a physician’s memoir of life love, and loss with Parkinson’s disease and dementia by Thomas Graboys, with Peter Zheutliwas published in 2008 but speaks honestly of disabilities acquired later in life.

My favorite of the recent memoirs is Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso. For psychotherapist, painter, feminist, filmmaker, writer, and disability activist Harilyn Rousso, hearing well-intentioned people tell her, “You’re so inspirational” is patronizing, not complimentary. In her empowering and at times confrontational memoir, Don’t Call Me Inspirational, Rousso, who has cerebral palsy, describes overcoming the prejudice against disability– not overcoming disability.This book will probably go on my list of all-time favorites for disability memoirs along with works by Nancy Mairs.

Those of you who parent a child or adult with disabilities may like The Broken and the Whole by C. Sherman. The author is a rabbi and the father of a quadriplegic son who grapples honestly with the theological and practical issues caused by a disability in the family. Also be sure to read the beautiful poem “Stargazing” Johnson Cheu just posted about thoughts and feelings parents and adult children have:

Pick up a memoir and get some wonderful insights into the lives of the 19% of us living with disabilities. It’s a great way to celebrate the ADA’s 25th anniversary.

Spoiler alert: There’s a lot of crabbing in this post; skip to the end for a recipe for crab salad!

The last several months I’ve been working up to July, the 25th anniversary month for the Americans with Disabilities Act. I’ve arranged a library exhibit, civic declarations, a couple programs and written articles on what the ADA has done for the 19% of us who have disabilities. Now it’s time to sit back and celebrate, I naively thought. It turns out we’re not in the Promised Land yet!

1. Lots of lobbying nets limited results: my county declared July “Disability Awareness month.” New York City declared it “Disability Pride month.” Which would you rather have?

2. I announced local celebrations and handed out a card at a book club I’m a founding member of. I left the meeting ten minutes early and they pick an inaccessible book for the next read.

3. Accessibility is a problem in the celebrating: has a photo project to celebrate; WI Libraries for All has an inaccessible link in the email to the blog about celebrating. It turns out the photo project also has stories and I could get to the blog using a different link, but even the celebrating involves work-arounds and reframes.

4. I am not alone in noticing limited success but still trying. Read Sarah Blahovec’s excellent piece in the July 6 Huffington Post: They’re even starting a disability news page, she says!

As my new favorite quote says: “If you don’t go after what you want, you’ll never have it. If you don’t ask, the answer is always no. If you don’t step forward, you’re always in the same place.” – Nora Roberts

Now here’s that recipe for crab salad. I only had to skip one inaccessible recipe from Kraft in the Google search to get to this one from

1/2 green bell pepper, chopped
1 onion, chopped
3 tablespoons butter
12 ounces imitation crab meat
1 cup mayonnaise

Directions: In a medium skillet, saute the green pepper and onion in the butter for 3 minutes, or until vegetables are tender.

Stir in imitation crab meat, and saute for another 3 minutes. Remove from heat, and put mixture into a medium bowl. Stir in mayonnaise. May be served warm or cold.

A year and a half ago, it was estimated that there were 150,000,000 blogs on the Internet. I certainly have not found all the blindness blogs out there, but below are some of my favorites:

Many blindness organizations have blogs, like American Foundation for the Blind, National Braille Press, American Printing House’s “Fred’s Head”, and Deann Elliott at the Carroll Center. The National Federation of the Blind has an excellent technology blog. There’s a conflict of interest here because I sometimes contribute to it, but I think the Wisconsin Council of the Blind’s “The Outlook from Here” is exceptionally good. It’s stories about blindness and visual impairment written by blind people in Wisconsin. A couple recent blogs on “The Outlook from Here” were the funny stories that happen when blind and sighted interact.

Although it’s not a blog, if you like funny, follow The Blind Onion on Twitter or like its page on Facebook. The headlines this anonymous soul sends out make me laugh out loud. A recent one was about “Local blind man goes deaf because of sighted people shouting directions at him.”

Other favorite blogs include:

Whether you want to hear stories from a student, a professor, a musician, a guide dog owner, an author, a poet, or an activist all of whom live full lives with blindness or visual impairment on board, happy reading!


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