When I’m giving disability issues talks, I’m often asked “Because of the ADA and other laws, are things getting better?” My answer is some version of “yes and no”.  Here’s this week’s version:

  1. Unsafe situation on nearby corner of busy street

The mile long reconstruction of an arterial road near my house just finished.  Drivers are breathing a sigh of relief about not having to drive a couple extra miles to get around the construction.  I walked part of the reconstructed sidewalks with a friend who used to teach blind kids and she pointed out that on one corner the truncated domes (bumps) were mis-applied. They’ll launch blind people kiddy-cornered from the northwest corner of the intersection to the southeast corner. I immediately notified a staff member in the city’s engineering department and she replied that she’d turned it over to the project manager and would get back to me with an update when available.  Being concerned that soon the snow will fly and it won’t be able to be fixed until next spring or summer, I notified the city manager. He has not gotten back to me yet.

  1. Unreadable obituaries:

When you reach the age I have, you start checking the obituaries as regularly as you have that first morning cup of coffee.  Recently the local paper switched their provider of obituaries and they’re no longer accessible to my screen reader.  When I contacted the local paper’s representative, they gave me the email of the help desk of the new provider. I emailed them and offered to work with them to fix the problem. No word back yet.  My work around is to ask a sighted friend who reads the paper to let me know if anyone she knows is listed in the obits.  Not the same, but better than nothing.

  1. Inaccessible library app:

The public library is touting an app, Libby where one can download audio and e-books on your iPhone. I downloaded it and opened it to a “secret” message to Voiceover users (meaning it wasn’t printed on the screen for sighted people to see, but just audio) that the app wasn’t accessible to us and we should use Overdrive app instead. After several emails and phone calls to the public library, they raised the complaint with the library system who will raise it with the vendor. On the company’s website I read that they’re “working hard” to make Libby accessible, no timeline given. I put a comment on the CEO’s blog since I couldn’t find his email, but have no way of knowing if it was read since I haven’t heard back. There’s plenty of responsibility to be spread around on this one: e.g. why did the company knowingly market an inaccessible app? Why did the library system buy an inaccessible product?

  1. Disability emoji’s launched in version 13.2 for iPhones and iPads:

For over a year, we’ve been hearing that some disability emoji were coming soon to iPhones and iPads. They have arrived, including persons with “cochlear implants” “probing canes”, “guide dog” and “service dog”. I’ve never heard a long cane, also called a white cane, called a “probing cane”. Others in the disability community point out that many disabilities including cognitive disabilities don’t get an emoji. I also notice some of the other new emoji give the person a high status profession “nonbinary judge” or such, but we just get a disability. Am I happy? A little! (Insert emoji of slightly smiling face in your mind)

I was reading Kushner’s excellent Nine Essential Things I’ve Learned about Life. He has a theology of “not yet” that I really like. Are things all better on the accessibility front? Not yet, but that may happen someday if we all keep plugging away on it.

 

(Edited version appeared in on cyberbullying.org)

                I was born blind and grew up in public schools. Hurtful teasing, bullying and shunning were parts of my growing up as was a very low self-concept. I hated being blind. All I knew to do was say the old saw about “sticks and stones will break my bones” and tell the bully to “shut up”.

Thankfully some things have changed,  although the Pacer Center statistics say bullying is two or three times more common for kids and teens with disabilities than the non-disabled. The online world adds wonderful access to resources and communities, but also new places to be bullied. The playground got larger!

There are laws like Section 504 and Title II of the Americans with Disabilities Act. There are resources for parents, professionals and teens like the Pacer Center’s National Bullying Prevention Center www.pacer.org/bullying and http://www.pacerteensagainstbullying.org  Parent support groups for parents of children with disabilities and social support/skill building groups for teens with disabilities exist. Memoirs like Temple Grandin’s Thinking in Pictures, and Mark Zupan’s gimp help teens know it will get better. Books for children and teens are available in alternate formats from www.bookshare.org so that those who don’t read regular print can know they’re not alone and learn ways to deal with the bullying.

Some things have not changed. A disability does make its owner more vulnerable because whether it’s physical, cognitive or emotional, the person has some limitations that a non-disabled person does not have. Those who bully look for differences and weaknesses. Parents, teachers, paraprofessional aides and therapists need to talk honestly with the child about acknowledging weaknesses, learning social skills and accentuating the child’s strengths. If the child can’t outrun the bully, can they use their verbal powers to use humor to diffuse the situation, say a loud and clear “no” or surround themselves with friends who can deflect the bully’s attention?

Denial at some levels still exists about acknowledging what a problem bullying is for people with disabilities. When I was shopping my children’s book Your Treasure Hunt: Disabilities and Finding Your Gold around looking for a publisher, several editors suggested I take the page out of it about what to do when bullied, because “that doesn’t happen anymore”. Parents fear to ask their child if they’re bullied partly because they know they will be furious if the answer is yes.  All that good advice about staying calm and not swooping right in to solve the problem goes right out the window when it’s your child, especially your child who has a disability.  Listening and giving verbal first aid “That is wrong”, “I’m sorry that happened” or “I’ll help if you’d like” is the way to go. Help the child brainstorm about what needs to be different next time and role-play techniques to use. Modeling compassionate but firm problem-solving teaches more than lecturing or ranting.  Help the child ask for the assistance they want. You are teaching skills that will last a lifetime.

Bullying of the disabled (and bullying in general) does not end with graduation.  Recently I had two encounters with a female bully that I needed to work with on a project. Bystanders were as shocked as I was and did nothing. The first time I froze, but by the second time I had a caustic verbal retort ready. The bullying has not recurred since then.  As I was preparing this blog, I came upon a book by Melody Beattie, Playing It by Heart about how to not fall back into being a victim that I plan to read. Writing this blog and my children’s book are also therapeutic in that I can help create a world where there is less bullying and more kindness and empathy. Together we can make a better world. I’d love to hear from you by email and/or at my blog https://kathiecomments.wordpress.com

After seven and a half years of work, Luna is ready to retire.  She’s slowing down and having a bit more trouble getting in and out of vehicles. She has a wonderful home with a couple acres of fenced yard to play in and a retired couple with a black Lab for company lined up.

So I start the several month process of applying to Seeing Eye for retraining.

My medical form has been received by Seeing Eye and my walk with an instructor was just successfully completed. I walk a little slower than I did seven years ago, but nothing else has changed.   If this was a baseball game and getting Young and Foolish was a home run, I’d say I’m solidly on second base. But then I happened to notice what Urban Dictionary says “first base” means, “making out and second base is…”   trust me, this process is not like that!

It’s a huge loss to say farewell to such a sweet, smart, intuitive creature. I’ll see her after her retirement and she may come back and bunk here when her new people are traveling, but she won’t be with me all the time.  As so often happens, in my inbox this morning was the perfect message, a Henri Nouwen meditation on dealing with hurts.  In part he said:

“You have been wounded in many ways. The more you open yourself to being healed, the more you will discover how deep your wounds are. . . . The great challenge is living your wounds through instead of thinking them through. It is better to cry than to worry, better to feel your wounds deeply than to understand them, better to let them enter into your silence than to talk about them. The choice you face constantly is whether you are taking your hurts to your head or to your heart. In your head you can analyze them, find their causes and consequences, and coin words to speak and write about them. But no final healing is likely to come from that source. You need to let your wounds go down to your heart. Then you can live through them and discover that they will not destroy you. Your heart is greater than your wounds.”

That’s the next step of the journey for me.  Luna is starting to send me ideas about getting blessed at IM church her last time there, etc. She’s so intuitive, I’m pretty sure she knows change is coming.  Last night she and Mack (a retired Leader Dog) were sprawled butt to butt on a friend’s long sofa, so Mack may well be her retirement coach. If all goes well, I could be in New Jersey in January. If they have snow, I’ll get to practice working in snow before we return to Wisconsin which I’ll guarantee will have snow.

Wish us luck and strength.

Kathie and Luna

The theme of the Inclusive Ministry church this month was the rainbow that God gave Noah after the flood as a sign to all of us that He is with us.  I started thinking about how I would explain the rainbow to one of our worshipers who is autistic and blind. I’ve never seen a rainbow myself and just dealt with it enough to know the colors in order and learn its shape so I don’t sound ignorant living in a sighted world. But as I thought more about it, it began to bother me: God gave this sign to sighted people, what did he give to us blind folks? The answers I’ve come up with so far are the feel of sunshine after a storm, soft breezes and the sound of a chorus of different birds all singing after the storm.

I was reminded of God’s generosity through the generosity of a friend that bore fruit this week.  When I turned seventy I got a big box of silly stuff from a friend including lots of raisins.  I re-gifted them to another friend who also turned seventy and was having knee replacement surgery. I suggested they’d help keep her regular and she reported back that indeed they worked! Only those of you who have been stopped up after surgery will truly know what a gift this was!

The gift from God that Luna’s presence in my life has been over the last seven years is coming to an end.  She’s having more trouble jumping in and out of cars and her work is uncertain some of the time. She’s nine and a half, so about retirement age. I’ve completed application forms, including a tuberculosis test and medical forms. I’ve found a fine potential home for her with a huge fenced yard and another Lab for company. Now I’m in line for a Seeing Eye instructor to visit and walk around with me to determine my needs. Somehow I’m guessing I’ll get invited to school in the January class.  Many people don’t consider New Jersey in January to be their top choice, but I’ll go with it because at least we’ll practice walking in the snow before returning to Wisconsin in the winter.  I’ve retired and retrained with New Dog many times, but it doesn’t get any easier.  Even though I’ll be able to visit Luna, I’ll miss her constant intuitive, intelligent and teasing presence.  I’ve talked to the pastor of the IM services and she will get a send off in one of those services as befits one of God’s beloved creatures.

 

Sometimes when one is retired, it’s hard to distinguish if one is “working” or “on vacation”, so I declared this long weekend as Vacation!

A friend and I took milkshakes to another friend who lives in assisted living in honor of summer.  That was tasty! Note to self: if I land in a facility, try to pick one that has a bistro or something so you can get something other than three square meals a day.

Next day, potluck supper and bridge. The food and company were grand, the cards favored the opposing team.

Following day had lunch and went fishing at Jeremiah’s Bullfrog www.eatmyfish.com near Menomonie, WI. Great food but nobody caught any fish. The one who might have caught something was Luna. If I’d only let her loose when the ducks on the pond swam right by her, she would have shown her Lab ancestry with pleasure. A good time with good friends.

Since hearing a loon in person not in a movie like “On Golden Pond” was on my bucket list, Sunday I was  up at four to go north to look for loons at sunrise on the Chippewa River flowage with lots of little lakes.  According to www.loon.org, there are four distinct loon calls; we heard three of them. Then on to Hayward for breakfast and strolling main street with all the other tourists looking for fudge to bring home and share.

Monday brunch for a friend who’s going on a month’s trip to Scandinavia; she needs deviled eggs and fresh corn to remind her why she’s coming back.  Then ice cream with a friend in honor of her sister who died.  We always went on ice cream runs together for Sunday afternoon entertainment.  Then a supper with other friends featuring all the leftovers from the weekend’s entertaining.

In case you’re wondering, Luna considered it a fine vacation because of all the new experiences and smells and because she got to skip Mass.   We need to go back to work on Tuesday to rest up from vacationing!

The first year of Inclusive Ministry church focused on God loves us. When it came time for the core team to lead in August, I jumped at the chance to take our content to the next level of: God loves us and expects something out of us in response. IM believes all have things to give, so I decided that all should have a part in crafting the sermon.

I did a lot of background reading on the ten commandments to try to figure out how to approach rules like “Thou shalt not commit adultery” at a level that would be understood by a varied audience; age range seven to seventy-plus with varying abilities and disabilities. I picked out five commandments and wrote a discussion question for each one.  When it came time for the sermon, I gave a general intro and then called on the table leaders to summarize the discussion from their table. Folks at the table could also show their art work to the group. For example, the “no other gods” table made pictures of other possible gods including the Green Bay Packers (as opposed to spending time on church activities.) The “thou shalt not kill” tables talked about alternatives to killing like walking away, counting to ten, etc. I covered the more abstract ones including adultery which I summarized as “Don’t have sex except with the person you’re married to” in case you’re curious.

We had a bit of the summer camp theme since it was August and the chief cook even brought two different s’more bars for our cookies to top off the meal.  Because of all the volunteers who took time out of their summer Sunday afternoons to help, serving as table leaders, greeters, music leaders and kitchen workers, it was a great day.  I kind of doubt that either of the pastors who were there helping out will try group sermons at their churches, but it worked!  The head cook almost had to multiply the loaves and fishes because of all the participants who showed up, but she did it the traditional way and sent a volunteer to the store for more hot dogs and buns.

We are the church together! We sang together, worked on the sermon together, ate and enjoyed each other’s company. People helped each other. I wish all churches had this feel.

 

In disability circles, the term “inspiration porn” is used to mean cloyingly sweet descriptions of an event featuring a person with a disability. They may have done something like winning a spelling bee even though they’re blind or maybe an able-bodied person invited a wheelchair user to the senior prom. In any case, it elicits a gag reflex from many of us with disabilities.

But I’ll risk saying I was inspired recently to have the honor of meeting with the two sessions of the Wisconsin Talking Book and Braille Library’s phone book club as they discussed my Occupying Aging. Book club members were fifty years old and older and several had additional disabilities along with their visual impairments. Some were adjusting to relatively new visual impairments. All were great readers and compared my book to other disability memoirs. They gave examples of parts of my memoir that paralleled their own experiences.  It’s addicting to talk with readers who relate so personally to your work. It inspires me to soldier on getting my book of blogs ready for publication.

Some of the stories these book club members told also inspired me to keep fighting access fights.  I do have the time, knowledge and connections to advocate that others in the disability community may not have.

I sent my input to the city’s engineering department about the redesign of a nearby intersection, encouraging them to use a three-way RRFB flashing beacon that also has auditory and tactile feedback when the beacon is flashing to indicate when it’s safe to cross the street.

Then I settled in with a new memoir Love Thy Neighbor by A. Virji about the struggles he faced as a Moslem physician in rural Minnesota. It’s comforting to read about others’ struggles for acceptance. As he said “Love is hard work.” His efforts are indeed inspiring.

 

In addition to being on a panel on a radio show and being on television, I decided this year to write a poem to celebrate the ADA. After all, not many laws have poems written about them! Here it is:

 

You can talk about me instead of to me.

You can question my right to be.

You can pity and disrespect me

And ignore my needs—“I didn’t see.”

And still I’ll rise.

 

I’m your grandmother who doesn’t hear.

I’m your friend living with anxiety and fear.

I’m your grandpa who has “lost his mind”

Or his wife who is going blind.

And still we’ll rise.

We’re one out of five

Not Dead Yet—still alive!

Our needs aren’t special—they just are.

A parking space that’s not too far,

A friend who listens even if it takes longer,

And fights for access with us—together we’re stronger.

And still we’ll rise.

 

We won’t stop until all can play,

Work, love and pray in whatever way.

So celebrate with us. Because of the ADA

And caring people, we can say

Together we’ll all rise!

This week is the 29th anniversary of the ADA and I had already commented on three inaccessible posts by booksellers and nonprofits before seven AM.

Help!

When you post a book cover, type out the title

Occupying Aging cover
“Book cover description: Occupying Aging: Delights, Disabilities, and Daily Life” by Katherine Schneider”

When you post a picture, type a short description

Katherine+Schneider.jpeg

“Photo Description: Gray haired woman and yellow lab guide dog stand on bridge at UW-Eau Claire.”

When you post a bumper sticker, type it out too.

ecology bumper sticker
“Bumper sticker description: Picture of Earth from space with text that reads “There is no planet B”

We blind Voiceover users would like to like what you like too.

I shared the above as a Facebook post and commented to the offending posters.  Two of three wrote a comment back saying they would type things out if they had time.  That reminds me of “helpful” flight attendants who tell me if the plane crashes I should wait until last to get off and they’d help me then.  To which I say (at least to myself) “No thanks; I’ll push and shove with the rest of them.

Then there were my technological struggles to download and read No Happy Endings by Nora McInerny. Bookshare had the book and I downloaded it just fine but it wouldn’t open on my preferred reading device. Eventually I downloaded it on to my iPhone and it read fine. It’s an excellent read about a widow who remarries with the theme that troubles and joys keep coming and life is not all tied up with a happy ending bow.

Sounds a lot like my thoughts about the ADA: access struggles continue but there are successes.  I filled out a survey on the public library’s website without any trouble and downloaded a new best seller thriller from Bookshare. My op ed piece about the Inclusive Ministry one year anniversary was in the local paper the day before the event.  I think of the twenty or so people who make each month’s event happen and all you people who do label your Facebook posts.  Happy anniversary, ADA! Live long and prosper!

 

 

Every year near the end of July, you’ll notice news pieces about the anniversary of the Americans with Disabilities Act and how far we’ve come toward access for  and inclusion of the one out of five Americans who has a disability. Please consider how you can turn the spotlight on advances in your community this month.

I’d like to highlight three things in the Chippewa Valley that give me hope for the good life being open to all.

  • A year ago, Lake Street United Methodist Church hosted the first monthly Ecumenical Inclusive Ministry (IM) Church for people with cognitive disabilities, their friends and families. Each month a different church or ecumenical team organizes and delivers a Sunday school/craft activity, a worship service and a fellowship meal. The attendance is about fifty when you count participants and the team in charge that month. I notice singing and the fellowship supper are the most popular parts of the event. The service occurs the third Sunday each month from 3:00 PM to 4:30 PM. For more info, or to request a ride or sign language interpreter at IM church, contact Ellen at Lake Street United Methodist Church at 715-832-6603.
  • The L.E. Phillips Memorial Public Library has purchased a braille printer. This printer is the first of its kind in a Wisconsin public library. Some uses for the printer include: printing legal documents, letters, greeting cards, recipes, directions for appliances, games, projects, magazine and newspaper articles, as well as public meeting agendas and minutes, just to name a few.  Customers wanting to have a document printed can email their document in either Word or PDF format to: annaz@eauclaire.lib.wi.us. There is a 10 page limit per document and customers are limited to one request per week.
  • Erickson Park at Glen Lock in Chippewa Falls opened an accessible area recently. Erickson Park has new accessible fishing docks, kayak launch, bathrooms, pavilions, walk ways and picnic areas and will connect to Irvin Park via an accessible foot bridge.

Have fun finding and highlighting things to celebrate in your community!