Quote from St. Augustine: “Hope has two beautiful daughters. Their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.”

As a core team member of our Inclusive Ministry church for people with cognitive and other disabilities, it’s my job and my joy to go to our monthly services. However, I also mildly dread the way some new volunteers relate to me and the other people with disabilities.  These are good Christians volunteering their Sunday afternoon to help us poor unfortunate disabled folks and they’re good bakers and cooks. But each month some of the new church’s volunteers display along with their Christian charity the following attitudes:

  • People with disabilities lack knowledge and even preferences. “Are you sure you didn’t live in such and such a group home? “I’m asked in a loud sugary tone after I’ve said “No, I live by myself” to the same question.
  • We need help. “Here I’ll do that for you” as I was working on the craft project. I’m no crafter but taking the backing off a sticker and putting it on a paper crown; this I can do!
  • We can be touched without notice. As the helper next to me first picked a dog hair off my sweater and then one off my face, I tried to make a joke of it, but felt demeaned and a little scared by a touch coming unexpectedly.

I know I am not alone. In the recent tweet storm about #whatdisabledpeopleknow there were many similar comments about churches. But since we’re creating an inclusive service, the “usual” attitudes bother me a lot.

I keep going because I think I’m the canary in the coalmine since I’m the only person with a disability on the core team. Unlike the canaries that just keeled over from the toxic gases in the mine, I’m there as a crow to squawk and problem-solve.  I model asking before helping, conversing the same with people with and without disabilities and accepting help as well as offering it.

But I’m stuck about what more I can do to change the “us versus them” mentality. I don’t think direct confrontation would work as in “Ask before you pick hairs off me. Would you do that to a sighted stranger?” Interestingly the same person knew not to touch a service animal without asking!

Also I’m stuck about how to go beyond tolerance to showing God’s love to these good people. So far the cranky comments haven’t escaped my mouth, but I can’t seem to move beyond mere tolerance.

For those of you who are bystanders to condescending and other inappropriate comments to disabled folks, please consider saying something. Don’t wait until you have the perfect comment; if you’re like me, that may be weeks after! Butt into the conversation with an ask like “May I help?” or a comment from your viewpoint on the topic. In addition to giving the person with a disability a moment to breathe, it tells them they have an ally.

Gradually a prayer is bubbling up. Maybe I’ll ask the leader if she’d read something like it every month before we start our service.

“Loving God, we’re here today to worship, learn, fellowship and serve each other. Help us meet each other with joy in our uniqueness and not fear in their otherness.  Let us offer and accept help, not do for someone. Help us listen and find common bonds, be they football or cats rather than talking down to anyone. Help us learn from the people we “help” so we recognize You in them and us. Teach us that we all are the church for each other and are each made in Your image. Show us how to love, not pity or resent each other.”

And Lord, give me patience and give it to me now, would you?

 

 

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Within twenty-four hours, two acquaintances and my favorite poet, Mary Oliver died.

One acquaintance showed many scars from her life. She was kindly spoken of as a “handful” as the speaker’s eyes rolled. In my better interactions with her I responded to the pain in her comments without letting the barb get through my skin.  She reminds me to watch my mouth (at least a little) when someone steps on me.

The other acquaintance was always gracious even as her needs for help increased. What an example! She also experienced the grit of life, but somehow used it to make her more sensitive to others.

Mary Oliver’s beautiful nature poems help me see the sublime in the ordinary.  This poem is a good example:

The Gift
By Mary Oliver

Be still, my soul, and steadfast.
Earth and heaven both are still watching
though time is draining from the clock
and your walk, that was confident and quick,
has become slow.

So, be slow if you must, but let
the heart still play its true part.
Love still as once you loved, deeply
and without patience. Let God and the world
know you are grateful. That the gift has been given.

I’m grateful for the gifts I received from each of these women.

 

 

This year in April I turn seventy! Would you be part of the celebration?  Would you email me a poem or song lyrics that you like and/or you think fits me by March 15?  I’ll put them in braille and then do a reading during poetry month (April) in an assisted living or nursing home.

I’ve been taking an informal survey and have found one friend who will celebrate seventy by drinking a huge Moscow mule and another who is planning a weekend getaway with kids and grandkids.

In case you’re curious why I’m doing this crazy thing, here’s my story: There are only a few books of poetry in Braille for a blind person to buy and treasure. I helped National Braille Press produce one 100 Poems to Lift Your Spirits. I’ve also helped put a Braille printer at the local public library. When I gather the poems and lyrics from this solicitation, I’ll put them on a thumb drive and take it to the library for them to run off in Braille.

If this project gives you nightmares of English class, feel free to delete the request or reconnect with that poetry-loving kid who lived in you before that English class. Haiku, limericks, song lyrics and hymns all qualify.

As I look back in gratitude and forward in anticipation, I thank you for your part in my life. I can hardly wait to read what you send! Email: schneiks@uwec.edu (in the body of the email or as an attachment)

Kathie

The Winter solstice is here with the longest night of the year.  Icelanders who know what to do with long nights have a tradition of giving each other books on December 24 and then retiring to bed with a book and some chocolate.

Best book lists for the year are coming out right and left. I decided to ask a dozen friends, a listserve of avid blind readers I’m on, as well as my Facebook friends for their picks.   Of course many folks pointed out the book recommendation depended on the friend, but the following got several votes:

Becoming by Michelle Obama, Educated By Tara Westover and Unsheltered by Barbara Kingsolver.

Here’s a wonderful example of a passionate recommendation of a book I wouldn’t have read before I heard the recommendation “I liked a recent nonfiction book about beavers a lot.  I learned that beavers have 2 sets of lips.  The inner set is fur lined and the beaver closes them so he can carry wood under water without drowning.

The book is called Eager by Goldfarb.  It really is more ecology than natural history as it is about how good beavers can be for the environment if not treated like varmints and eradicated.  They can control water where it is too wet.  They can encourage water where it is too dry. One strange story in the book was about a rancher who wanted to get rid of beavers on his land but didn’t want to kill them.  So he live trapped them, spanked them with a board, released them somewhere else.  Beavers always came back though I don’t think he knew if they were the same beavers.”

I’d add A Gentleman in Moscow by Amor Towles because of the wonderful character descriptions in the novel. If you’re looking for a generalist anthology of poetry to give, as I was, I highly recommend 100 Poems to Lift Your Spirits by Pockell.

If you were to celebrate this tradition, what book(s) would you give this year?

 

The word of the week was “holifrazzle.”  Amidst the pre-Christmas bustle, I’m trying to make some space for God to tell me how to go a little deeper, not just faster this season.  So far the following:

Encouragement to share my gifts:

Volunteering:

  • Luna and I will join Fran and her mom as therapy dogs in the library for students during finals week
  • I’ll bake cookies and take them and chips to our feed the students during finals Ecumenical Center efforts and we’ll greet for a couple hours
  • I made black bean chili and hosted a potluck for Leader Dog puppy raisers (pups, people and food were all fabulous)
  • We’ll help hand out books at Give a Kid a Book. I’ll bring a few videos this year that are based on books if a parent says their child just isn’t a reader
  • I organized the December Ecumenical Inclusive Ministry service and gave the sermon about we all have gifts to share
  • Because of friends nearing the end of life, I read Yalom’s Staring at the Sun about dealing with the fear of death (very good and not morbid)

Find some fun things to do instead of sitting on the sidelines:

  • Went to a holiday concert where a friend was playing the flute—delightful!
  • Bought an Echo Dot and am enjoying several word games on it. Alexa hasn’t sold me anything yet although she’s trying!
  • Went out for some meals with friends and had others over for tea
  • Still looking for the perfect Christmas read (something like David Sedaris’s Santaland Diaries. Winter Street by Elin Hilderbrand with its dysfunctional family antics kind of fills the bill.
  • Listening to a new carol each day from a different country at Hymns of Advent | The Lutheran World Federation
    https://www.lutheranworld.org/advent-hymns
  • For a feel good movie watching “Pick of the Litter” a documentary about four pups being raised to possibly become guide dogs.

A recent “Thought for the Day” podcast from BBC by Brian Draper gave a name to a disease I had a twinge of this week: fear of missing out (#FOMO). It’s risky to self-diagnose, most of all from info from the Internet, but I recognized the symptoms immediately.

According to Wikipedia, “Fear of missing out, or FOMO, is “a pervasive apprehension that others might be having rewarding experiences from which one is absent” The term was first used in the late ‘90’s and is portrayed as a problem affecting mainly millennials hooked on social media where they see all the fun things others are doing.  Of course advertisers exploit it with “last chance” advertisements.

I think people with disabilities and other sidelined groups may have had FOMO long before the Internet. For example, my latest twinge occurred when a friend was talking about going window shopping to a bunch of little boutiques. I would not have had FOMO if she’d been talking about going to Black Friday at a big box store! I don’t even care much about shopping, which is why I knew it wasn’t envy really.  I think deeply about the perfect present for special folks and didn’t want to miss out on spotting it and having that “this would be perfect for…” revelation.

Even with some fairly accessible websites like Amazon, window shopping is hard for me as a blind person.   Where to start!  Unless someone describes a new thing to me, I don’t know it’s out there. For example, a sand painting under glass that you shake and the sand moves is the gift I chose for a friend in a nursing home with multiple disabilities. It was a friend living in an assisted living who told me about this treasure.

The maneuver that helped tamp down my FOMO was focusing on the person and what they like rather than my fear of being an inadequate giver. “It’s not all about you” I reluctantly admitted to myself.

Of course I consulted the Internet for treatments and found a delightful article on the GQ site. It prescribes acceptance and reorienting one’s thinking to #JOMO, the joy of missing out.  I could think about the hassles of going window shopping and the joys of spending that time walking the dog, cooking for my brunch for friends tomorrow and reading a good book.  And trolling around two websites of accessible books looking for the perfect Advent devotional to download: FOMO lives!

p.s. To help counter the FOMO, I emailed the BBC and left a comment on “Thought for the Day” a podcast I really enjoy. Gratitude helps salve FOMO too.

 

 

 

When is the last time you heard a talk that inspired you?

            This week for the tenth anniversary of the Disability Issues Forum I support on campus, I brought back a favorite speaker, Kathy Nimmer. She’s an author and high school English teacher (Indiana teacher of the year, 2015).   She again wowed a standing room only crowd ranging in age from a ten month old Leader Dog pup to humans in their eighties. She was inspirational without being “inspiration porn”. She has come through struggles, but is uncomfortable with being labeled as an overcomer.  She’s a fabulous motivational speaker and comes across as real not a phony.

In a nutshell, her talk was about what we can learn from canines and kindergartners about learning, laughing and loving. It includes some readings from her book Two Plus Four Equals One: Celebrating the Partnership of people with Disabilities and Assistance Dogs. Her inspiring stories included some about people with disabilities, but they escaped being inspiration porn because the people described were not one-dimensional objects to be pitied or used to motivate. Stories shared from her own life included her blindness as part of the story (which it is) but not as the focus “see what I can do”. She does not court pity or cheap admiration.  

If we look to songs for inspiration, as I often do, three kind of fit what Kathy was doing. “Climb Every Mountain”: I think she’d agree with the following rainbows until you find your dream part, but not the climbing every mountain part. She’d go around some I’m convinced.

“We Shall Overcome”: maybe in the long run, looking back it’ll look like overcoming, but many of the challenges will have been slogged through, wrestled with and not gone over like one checker jumping over another.

Is she “The Man in Black”? (or at least the woman)?

“In a way, her message was about carrying off darkness:
Ah, I’d love to wear a rainbow every day,
And tell the world that everything’s OK,
But I’ll try to carry off a little darkness on my back,
‘Till things are brighter, I’m the Man In Black”

She looked to kids and canines to show us the excitement of learning, loving and laughing to help us get through dark times. But I don’t imagine her wearing black while she does it, somehow. I didn’t think to ask anyone what she was wearing, but the beautiful bracelet she made and gave me was pink and blue.

If one examines the best seller list, there are many inspiring books, showing that we’re all in the market for inspiration! Kathy Nimmer’s next book when she retires from teaching and mentoring may well be among them someday I hope. It will be closer to John Kerry’s Every Day Is Extra than David Jeremiah’s Overcomer I’m guessing.  Or it may have the flavor of the “press on” verse of “How Long?” by Pepper Choplin.

https://www.youtube.com/watch?v=wJzzuWoIW0Q

Here’s to that brand of inspiring!

 

What do you think when you hear someone scored one out of three?  In baseball, that’s a great batting average, on a school test it isn’t even passing.  Today one advocacy issue came to a happy conclusion and two more didn’t.

The President has signed into law: …

  1. 2559, the “Marrakesh Treaty Implementation Act,” which provides for the implementation of the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled.

This is great news for blind and visually impaired people from all over the world! All of us who truly love to read are so pleased this treaty has finally been ratified. More books will be available no matter where one lives.

On the other hand, I stumbled on a piece of county code law that apparently says one cannot attend county meetings electronically.  The fear is someone else could call in and pretend to be you and cast a vote without them being sure you did it. How many people would care to listen through county board and committee meetings just to make one vote is questionable. This item came to my notice because the ADRC board was creating a committee on which one recipient of Meals on Wheels for the “homebound” was supposed to serve or someone who had a family member on the meals. But it goes deeper to me because if we want our government to be truly representative, we need divers voices including those of people who can’t leave home much.  This should be an issue that the ADRC would champion; I’ll lead the charge.

Then I heard back from the university’s facility director that the university won’t put a rumble strip, truncated domes strip or anything to tell blind people when they’re walking off campus right on to a street because the ADA does not require them to do so. Nobody I’ve discussed the problem with thinks it’s a bad idea and many are all for it, so it’s a matter of finding out who can wield enough power of persuasion to get the university to do something they don’t have to to keep students, staff and visitors who are blind safe.  Sigh! I wrote a letter to the student newspaper about advocating for this in honor of the upcoming White Cane Awareness Day.

I feel too tired to celebrate the one out of three, thinking of the two that remain. That’s just one day’s haul of issues!

p.s. But then a fun little fourth problem came along: the ear buds I use to listen to the talking ATM get all tangled up in my purse. A friend told me to wind them around a cork and push the jack into the end of the cork. I immediately sent out an SOS to my wine-drinking friends about my need for their next cork. I’m confident this one will be solved quickly.

 

 

Up Where We Belong by Joe Cocker
“Who knows what tomorrow brings
In a world few hearts survive
All I know is the way I feel
When it’s real, I keep it alive

The road is long
There are mountains in our way

But we climb a step every day
Lord lift us up where we belong
Where the eagles cry, on a mountain high
Lord lift us up where we belong

Far from the world below, up where the clear winds blow
Some hang on to “used to be”
Live their lives looking behind
All we have is here and now

All our life, out there to find
The road is long…”

Sometimes a song just grabs you and it’s your theme song for a while.  This song grabbed me early this week when I heard it in a NPR story about Buffy Sainte Marie.

Monday: A trip with friends to see the new Military Working Dog statue at The High Ground. A carload of people with varying disabilities and abilities takes off for a road trip on a rainy October day, prepared to picnic outdoors and walk around a remembrance park for veterans.  We ended up dodging between rain squalls long enough for me to climb up and touch the dog sculpture—a proud German Shepherd on full alert with his soldier.  Even the rough thick fur on the dog’s chest was well-sculpted.  We ended up at home for an indoor picnic afterwards full of laughter and good feeling. Everybody’s disability needs were cheerfully accommodated. These are the kind of friends who even say something positive about my kale burgers!

“Who knows what tomorrow brings” but we’re all hopeful another road trip will happen for this crew.

Wednesday: Five events in one day: cooked two meals for friends, chaired a committee meeting, went to a workshop and did my month’s grocery shopping.  The workshop was on the similarities between improv comedy and dementia care giving. One of them was living in the moment. No time to ponder just enjoying the people at each activity. “All we have is here and now” and it was good!

Suggestions for care giving included saying “yes and” instead of “no” and not dwelling “in the house of guilt.” Of course the usual self-care ideas of accepting help and finding easier ways to do things were also mentioned.

Saturday: As I went to the farmers’ market with a friend, we exchanged tales of woe about household disasters. She called it “Queen for the Day” competition. My entry included: a black screen on the computer that would not talk at all so I didn’t even know it was black until she told me, an iPhone that needed to update twenty apps because I’d updated the IOS and a garbage disposal that quit working (on a weekend of course).  Her entry was smelling something dead in her kitchen. It turned out it was a dead mouse floating in a vase under the sink. The vase had caught most of the water from a leaking sink pipe. I believe she wins just because of the image of the dead mouse floating!

“There are mountains in our way
But we climb a step every day
Lord lift us up where we belong.”

P.S a new children’s book “Lorraine: The Girl Who Sang the Storm Away” by Ketch Secor carrier this theme of a song bringing you through troubled times. Synchronicity lives!

 

 

 

 

Since it’s September and the World Series is coming up, maybe I can get away with making a baseball analogy for my angst.  My issue is that I often don’t get beyond second base in inclusion in groups and organizations.

To me, the bases are as follows:

First base: I show up and am not excluded and may be casually welcomed at a group event. No attempt is made to get to know me.

Second base: I figure out what I can do to help the organization, volunteer and efforts are accepted.

Third base:  I take charge of some area and/or start working to make the organization more inclusive of people with disabilities.

Home run: I’m welcomed both for what work I do but also as a person with disability accommodation needs like rides, help through the potluck line, etc. I’m known and embraced.

I seem to get stuck on second or third base. But I want the home runs! I want the Tigers to make it to the World Series too, but that seems to happen only once every twenty years or so.

Attacking the problem as I usually do, I did some reading. The best book I found was Belong: Find your People… by R. Agrawal. She talks a lot about doing the inner work to figure out what and why it isn’t working. Is it fear of missing out or fear of being left out that you feel? One of her rules is the 80/20 rule that if 80% of the time it feels good and like both you and the friend you’re thinking about are putting equal energy into it, then it’s a productive relationship; otherwise, re-evaluate it.  The only area that I might need to work on from my initial “gentle self-awareness” based on this book is vulnerability. She says that you need to be “vulnerable, intentional and courageous” to make belonging happen.

I fear being too vulnerable about disability accommodation needs early on for fear that I won’t make it to first base.  The balancing act of presenting myself as someone with gifts to offer but also needs is a tricky one for me.

Her ideas of being a five senses friend and ways to be playful in friendships and organizations and groups gave me some good ideas for the IM church project I’m involved with.  And her emphasis on gratitude reminded me that I am very grateful for the friends and groups I have. This week I dine out with two different groups and have a book discussion with another group.  Several home runs in one week. Maybe the Tigers will make it to the play offs too—or maybe not!