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 (www.hadley.edu) 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: http://www.instituteondisabilityculture.org/examples-of-our-disability-culture-3-of-steves-poems.html

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: http://www.sunherald.com/2015/07/13/6320418/abby-wheelchair-user-has-no-need.html

On the actual anniversary day I plan pizza with friends and a tour of some of the sculptures on our city’s sculpture tour: http://www.sculpturetour.org/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: http://atticusreview.org/stargazing/.

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: disability.gov 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: http://www.huffingtonpost.com/sarah-blahovec/we-need-your-help-signed-a-disability-activist_b_7512748.html. 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 allrecipes.com.

Ingredients:
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” http://theoutlookfromhere.wordpress.com 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!

In honor of all who mother in one way or another, I offer you this poem I wrote for a poetry class at my local library. The teacher said that it couldn’t rhyme, so here goes:

Family of Nine
By Katherine Schneider

Nine mugs march across the shelf with pictures and names

Reminders of forty-one years of guide dogs.

Sighted friends remember them by color and expression.

I hold dear the adventures we shared.

All have kept me safe, each in their own way.

Trust a dog with your life? Cindy taught me yes!

Beth was bold—shouldering obstacles aside like poinsettias on narrow steps up to the lectern at Mass.

Sugar liberated snacks from people while still guiding flawlessly.

Tatum ripped my heart out; dying in a freak accident.

Carter was noble and steady—a Golden saint.

Garlyn had the work/life balance thing down just right.

Ivanna said “Please like me” to the whole world.

Fran was flexible and cheerful but firmly signaled retirement when her vision started to fail.

Now Luna shines—quiet in public and a lunatic at home.

All have been best friends, eyes, guides and companions on life’s journey.

Will there be a tenth cup?

Parents raise their children with disabilities hoping they will become members of a community somewhere, somehow. When I talk to them about what they’ll need to do to accomplish this, it has elements of being a Tiger parent: tough love, as well as all the time, energy, effort, community support and luck it takes all parents.

Here’s what involvement in my community looked like this week:

  • I received an award from a local group for what I’ve done for children and a certificate of thanks from a board I was cycling off of. None of the materials were provided in accessible format until I requested the certificate be sent to me electronically. For the award ceremony to go off smoothly, I took a friend with me and walked through the trek from my seat to the podium several times. My only melt-down almost occurred as the officials for the award ceremony kept moving the podium (“just a little”) and posed the question “How are you going to go get the crystal bowl after your talk?” at the eleventh hour. That involved a friend coming up and carrying the bowl so I could work the dog and hold on to my speech with my sweating fingers!
  • Having seven groups of friends over for tea, meals, a birthday party, etc. Entertaining is something I can do if I know in time to get what I need at my monthly grocery store run. Just tell me what lights are on when you exit and where you put your cloth napkins! Sometimes it’s hard to think like a sighted person.
  • Reading my poem “Family of Nine” about my guide dogs at a poetry workshop I attended at the public library. The teacher found at least one nice thing to say about each poem. I think I learned what I was supposed to from the assignment: I don’t know what a poem is and it isn’t that easy to write one.
  • Asking several people before securing a ride to the funeral of a prominent local citizen. He served on the city council and at least listened to disability issues I raised.
  • Volunteering this week included playing in a Scrabble Bee fundraiser for a literacy organization, talking to fifty first graders about what it feels like to be different, helping a graduate student improve accessibility of her survey, a phone conference with an intern who is doing a 25th anniversary of the Americans with Disabilities Act display at the community college and reading Scripture at Mass.

None of them major commitments, just part of being a member of the community, giving what I can.

  • My guide dog had to have her teeth cleaned and three teeth extracted. I have a big enough base of friends to get rides to and from the vet and to have people stop by to sit with us as we both whined afterwards.
  • Participating in two book clubs, grocery shopping and trying to keep up with email and Facebook in addition to diving into a new thriller leave me wondering the typical question of retirees: How did I ever have time to work?

So far sixty-six is starting out to be a wonderful age to be. I’ve got it all:

Health:

Both my guide dog and I are in reasonably good health. She has to have her teeth cleaned which means a day out of service. But I have the friends lined up to take us to and from the vet and my retired guide dog will be here the night Luna comes home to nurse her through the post-anesthesia jitters. Last time she had anesthetic she cried for six hours straight coming out of it, so they’re trying a different kind.

Work/volunteering:

This week I gave a guest lecture and hosted a breakfast for a guest speaker. I’m working on a couple upcoming speeches including researching the Daredevil comic with its blind male superhero. I baked cookies for the Friends of the Library book sale volunteers. I’m plugging away getting pictures and objects lined up for the 25th anniversary of the Americans with Disabilities Act display at the university library. I helped lead a book discussion on All the Light We Cannot See. The members of the book club were receptive to my rant on how blindness really is as compared to how it’s pictured in Doerr’s novel.

Friendship:

I’m lucky to have many friends who celebrated my getting older with meals and gifts. The best gifts were their presences to catch up on what we’d been up to and laugh a lot. To spend time with friends is one of the best parts of retirement to me.

Spirituality:

I’m blessed to have a good church within walking distance, Christian and non-Christian friends tolerant of my views and an app to read me the daily Scripture readings. The time to read uplifting books like Ann LaMott’s Small Victories is also wonderful. This year I’m again going to try to read the Bible cover to cover. Last time I tried I got through five books and stalled out. Being 66 and trying to read the 66 books of the Bible seems auspicious, but time will tell.

Play:

Playing bridge and trivia crack keeps my mind sharp. Isn’t that a righteous excuse for having fun! Trying to encourage votes for Fran (my retired guide dog who is losing her vision) to be one of Wisconsin Lottery’s top dogs by using Facebook tested my social media skills. And then there are my spy thrillers and police procedurals. This week I started attending a four-session poetry class at the public library. I’m so glad to live where we have a good public library and in an era when many more books are available electronically so I can read them than when I was growing up.

Of course the world goes on with wars and crises and elections don’t always turn out as I’d like. But so far I recommend being over sixty-five highly! I may even aspire to hitting a hundred and seeing if I can be as astounding as ‘The 100-Year-Old Man Who Climbed Out the Window and Disappeared’.

Tip to blog readers: If you’d like a funny blog on interactions between sighted and blind worlds, try “You’ve Got to Laugh Sometimes: ABAPITA Moments”: https://theoutlookfromhere.wordpress.com/2015/04/09/youve-got-to-laugh-sometimes-abapita-moments/>

Later this month I’ll receive an award from a local group for disability advocacy work I do for children. I’m hoping to activate my listeners to initiate actions to make my town more inclusive. If they find it interesting and/or it helps them initiate action, I’m okay with those “I” words; just not so much with the “inspire” word that gets thrown around about people with disabilities way too much.

Here’s my three-minute rant:

Growing up blind gave me personal experiences of unequal access to information and to other good things of life. This fueled my passion to provide opportunities to people with disabilities. By being mainstreamed in public schools long before it was the norm, I learned to ask for what I needed like not playing volleyball in fourth grade. I asked to do more of the calculations and lab write-ups in chemistry class and less of the pouring of chemicals. These rudimentary self-advocacy skills were easily turned into advocating for others in the 19% of people who have disabilities. Educating strangers in how to help me meet my needs morphed into educating children and adults about disability issues. Add a handsome Seeing Eye dog by my side and the invites to do public education poured in from nursery schools to senior centers.

When I had the opportunity to start the American Library Association award for children’s books about the disability experience, I knew first hand that more good books were needed. From serving on non-profit boards I knew the need for the Access Eau Claire fund I started. To help meet access needs costs more sometimes. Non-profits can apply for a grant to help them serve all including people with disabilities.

As we approach the 25th anniversary of the Americans with Disabilities Act, it’s important to look at who isn’t included in the good life in Eau Claire and how can we help make inclusion happen. We may have achieved most of the curb cuts, wider doors and bathroom changes we need, but we have a long way to go to equal access to information for people who are deaf or blind. Program access for people with a wide variety of disabilities needs improving.

Taking those next steps in providing access takes a Tehabi attitude. In case you haven’t met Tehabi yet, it’s a Hopi Katchina story doll. A Blind man carries a mobility-impaired man and the moral of the story is: you see for me; I’ll walk for you. Tehabi people ask what help is needed or wanted. They think about who’s not represented on the boards of decision makers and how can we get them there. Tehabi people know that although someone has a disability, they also have abilities. Tehabi people accept help as well as giving it because they know it’s not a one-way street. Tehabi people carry us all forward toward a richer more inclusive Eau Claire.

Thank you for being Tehabi people.

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