Maxine Hong Kingston says in her meditation on turning sixty-five, I Love a Broad Margin to My Life, “I’m standing on top of a hill; I can see every whichway — the long way that I came, and the few places I have yet to go.”

This week I turn 65 and somehow this has caused me a lot of reflection about what do I want to keep doing, stop doing and start doing. Guest lecturing and writing are definitely on the keep doing list. Writing is mainly this blog and contributing occasional posts to other blogs like www.disability.gov. I may let serving on some boards go, especially the ones that feel like rubber stamp boards. My activism on disability issues consumes a lot of my energy and I worry how I’ll keep it up as I age. My encounters with services for seniors worry me. I’ve had organizations tell me they’re for seniors without disabilities. When I point out that half of seniors will develop disabilities they shrug as in “let them go to nursing homes”. I have a sneaking feeling that eventually I’ll need to balance accepting graciously what can’t be changed with changing what can. Think repeating the serenity prayer a hundred times a day would get it through my head?

Our church had a day and a half mini-retreat this weekend which gave me a good chance to assess where I stand. It’s clear I need to do more prayer time and more delighting in God’s creation. I’d also like more grace. As Mary Oliver said: “You can have the other words — chance, luck, coincidence, serendipity. I’ll take grace. I don’t know what it is exactly, but I’ll take it.”

It’s been a week of celebrating, working a little, napping and enjoying walking on clear sidewalks.

With friends both near and far, (two-legged and four-legged), good books, music and food, and meaningful volunteer work, I’ll make it through the next era of life.

Did someone declare this week as National Disability Access Advocacy week without telling me?

First I had to advocate for a podium at ground level for a meeting I was part of instead of having to go up on a portable stage with little steps and no handrails. As I pointed out, this was not just for my benefit but also for ladies wearing high heels, elderly who don’t see and/or walk too well, etc. The only way I got action was to kick it up to the level of the funders of the event.

Next I had to advocate for work arounds for preparing background materials for a workshop I’ll be part of that would work for a co-presenter who has a hidden disability that they are not disclosing. At the end of the week I had a church retreat with a study book we had struggled hard to get ahead of time on CDs. The access issues at the retreat included extra printed materials that I didn’t have, so I couldn’t sing, pray or read aloud as others did and the usual daily human-human interactions about would you help me through the lunch line? Are there any seats at a table with other people before you dump me at a table by myself? I’d give my advocacy on the fly skills about a “B”, but in one instance the holy spirit whispered the perfect comment to me and I used it to good effect—we all got to laugh together.

Near the beginning of the retreat, we’d been asked to pick a rock and write on it with some kind of marker what we wanted out of the retreat. I picked my rock but didn’t ask someone to write on it because I couldn’t read it and why should I? At the end of the retreat we picked our rocks back up and read them aloud. I found mine and said I had written on it in invisible ink, only visible to truly holy people. Trying hard to live out the call to make peace, I emailed a group I’m part of that had unthinkingly excluded me from a group activity suggesting a more inclusive way next time.

Wouldn’t you know it; I also got the perfect background material to read for this week in my email halfway through the week. Terri Mauro blogs about children with disabilities, parenting issues, advocacy, etc. Her excellent article is at http://specialchildren.about.com/od/ieps/ss/What-Kind-Of-Advocate-Are-You.htm, and the quiz that goes with it is at http://specialchildren.about.com/library/advocacyquiz/bladvocacyquiz.htm. Of course I found a bit of myself in all the styles: Avoidant, Apprehensive, Accommodating, Assertive, and   Aggressive. These advocacy opportunities never come in a vacuum. The week was full of the usual, guest lecturing, spring vet check-up for Luna, and trying to sneak in time to read Divergent which I’m really enjoying. Life is so daily!

As I look forward to next week, lines from two songs are running through my head: “When will they ever learn?” from Peter Paul and Mary’s song “Where Have All the Flowers Gone?” and “Hard Times Come Again No More” from a song by that name by Stephen Foster. What’ll it be? Stay tuned.

Lent, that time of spiritual house-cleaning and self-denial started last week. For me, I got two firm reminders on Ash Wednesday that I, Katherine Schneider, Ph.D., retired clinical psychologist am not all that important. Lent is supposed to be about prayer, fasting and almsgiving. Apparently my fasting is supposed to be about fasting from self-importance this year, not chocolate!

The first lesson in your education and career are not all that important came as I was waiting for the Ash Wednesday service to begin at a local church, not the one where I usually worship. I was sitting up front with a friend with a mobility impairment. Behind us a few rows an elderly lady, meaning older than me, loudly announced to her friend next to her that she knew me; I was a Walmart greeter. My hackles rose, more because of my feelings about the store than my feelings about the job I was reputed to have. My ego was ready to charge back there and tell this lady that I had worked at the university, but eventually the “still small voice” of my better self reminded me that she was not talking to me and it wasn’t really all that important that I butt in and change her stereotype. Maybe I needed to pray for a more generous attitude toward peoples’ misperceptions instead of launching into public educator mode.

Round two of denial of self-importance came at a meeting that evening about some new legislation affecting people with cognitive disabilities. There was a great speaker followed by punch and cookies. The audience was a good mix of professionals who worked at what we used to call sheltered workshops, family members and some young adults who had significant cognitive impairments. My guide dog gathered a circle of young folks who wanted to pet her. Since several had a cookie in one hand and were petting with the other hand, I was supervising her closely to be sure no unauthorized cookie grabbing was occurring. She was being an angel. Up came a young staff member from one of the sheltered workshops and asked me if I worked at the workshop in Eau Claire. I said “no, I’m retired.” She asked if I was retired from working at that workshop and I said that I was retired from working at the university. “What did you do there?” she queried in total wonderment. “I was a clinical psychologist” I replied and turned back to supervising my guide dog. Apparently in her training they’d not talked about the variety of jobs people with disabilities might hold. Again the Holy Spirit was active, making me smile to myself about this second assumption in one day by a total stranger that they knew what I was about based on my blindness.

Usually important things happen in threes. If I can let the spirit make a few more dents in my self-importance, maybe Lent will help me live this wonderful quote:

“Ring the bells that still l can ring.
Forget your perfect offering.
There is a crack in everything.
That’s how the light gets in.”
-Leonard Cohen

A question I’m sometimes asked bugs the heck out of me: “Did you read that book or listen to it?” As far as I know, there are three ways to read: using your eyes, using your ears, or reading braille with your fingers. None is better than the other; whatever gets info into brain is best.

Reading is so important to me, it’s almost a religion. Holy days include Louis Braille’s birthday in January, Read Across America day in March and National Library Week in April. Braille was born 206 years ago, so independent reading for the blind is not as old as the United States. Braille books were basically only available from the state branch of the National Library Service when I was growing up, so the librarian there was my first boyfriend because he sent me books! Later this spring I’ll participate in a Scrabble Bee fundraiser for our local literacy organization because I know what it’s like to not be able to read independently simple things like medication labels, bus schedules, job applications, etc. Nowadays with Internet access, downloadable audiobooks and screen readers, much more information is available by reading with my ears. Of course for some things like doing Sudoku or playing cards there’s nothing like braille.

Later this month I’ve been asked to read a couple poems in a Robert Frost birthday celebration my university is having in celebration of a collection of Frost books and letters that was donated to the university. One of the books is a braille volume (in mint condition) of a 1942 book of poems The Witness Tree. To read from a book older than I am gives me shivers! I now understand why people will stand in line to gaze at a document like the King James Bible or the U.S. Constitution.

Each way to read has its disadvantages:
• Braille: no cartoons or comics
• Print: have to turn the light on to read in bed
• Audio: may have to take notes so don’t fall asleep while reading

Just in case you’re looking for some good books to curl up with, here’s an eclectic group that a book club I’m in will be discussing this year. Only requirement was that the book be available from the public library in audio, large print and regular print so all club members could access it. Our list for 2014: Come Home by Lisa Scottiline, Girls of Atomic City by Denise Kierman, And the Mountains Echoed by Khaled Hosseini, Flight Behavior by Barbara Kingsolver, Dear Life by Alice Munro, Burgess Boys by Elizabeth Strout, The Light Between Oceans by M. L. Stedman, Sycamore Row by John Grisham, and David and Goliath by Malcolm Gladwell.

Read on!

One of the things I love about retirement is picking my own projects. However lately several of them were at points where I was working hard and not getting off first base. Then we’ve been having a winter that would make a groundhog move to the southern hemisphere. I also noticed I was not alone; people on listservs were chewing madly on each other and people on the streets were giving each other those February looks of: “don’t even try to smile at me; just go away!”

Somebody on one of my listservs put out a call for funny stories about how sighted people try to help and sometimes there are unintended consequences. I answered the call with the following story:
I was going through the airport security in Minneapolis and the TSA gal who took charge of me loudly asked me what sex my guide dog was. There was a short pause while I thought about several answers but decided on just the facts and said “female”. She then blustered that they had to have a female search her because that was the law. I bit my tongue to not laugh in her face, but succeeded in just saying “okay”. No such law exists but she did what we all do sometimes when we don’t know what to do; we make it up and get loud and firm about it.

When I shared this story on the listserv, another person came back with this story: “My wife and I (both with guide dogs) were going through TSA security at the St. Louis airport. My wife and I were separated but she was close enough to hear what transpired. I was thankful for that as I figured nobody would believe my story.

Same deal though, this very gruff female asked what sex my guide dog was. I said male and then she shouted, “male pat down, I need a male pat down here.” I was stunned, actually.

Here came a very large TSA agent with a very bald head. As he got within hearing range I said, “My guide dog is male but he is neutered so no problem.” Instantly the TSA bald security guy turned beat red, to include his head. He grinned a huge grin and patted my dog on his head. Next words were to my dog from him, “I’m sorry you had that surgery but enjoy your travels.” Off we went with the big male TSA agent chuckling big time and I did hear the lady calling for a male TSA loudly exclaiming that she was just following the rules, males on males, females on females for pat downs.”

To give my mirth muscles more exercise, I asked Facebook friends for nominations of websites that had funny stories without pictures which my screen reader can’t describe. I got nominations for The Onion http://www.theonion.com with wonderful funny “news” stories some of which are even true and Pretty Good Jokes http://www.publicradio.org/applications/formbuilder/projects/joke_machine/joke_page.php with Garrison Keillor Joke Show kinds of jokes. If you can stop with just one, you’re stronger than I am!

Got any nominations for fun websites full of text not pictures?

Now for the commercial: a group of writers who are blind or low vision or who have a family member who is and who live in Wisconsin have started a blog: http://www.theoutlookfromhere.wordpress.com

Check it out! So far the stories are mostly earnest, but I’m betting the funny ones will come soon.

                Whether blind people hear better than sighted people do is open to debate, but I’m sure we listen better.  Since it’s Valentine’s Day tomorrow and I don’t have time to send you a box of chocolates, I’d like to offer you a Valentine of some wonderful sounds.

                What’s your favorite sound? Some of mine are: bird calls, particularly crows, sound of my dog snoring quietly or wagging her tail, church bells, the clunk of my mailbox as the mail carrier puts books in my box, and the sound of frying onions. When I surveyed colleagues on a blindness-related listserv they came up with multiple votes for: a  crackling fire in a fireplace, rain on the roof when you don’t have to go out, a purring cat, the voice of a loved one,  waves slapping on the shore, a laughing child,  well played musical instruments, fog horn and ocean liner’s horn, train whistles, wind blowing through pine trees,  coffee perking and the dinner bell. Among the unusual sounds they named as favorites was the sound of a porcupine mumbling. That would make me nervous wondering when my Seeing Eye dog would be nosing Porcie and needing quills pulled out of her nose, but different sounds for different folks! Radios playing and even the sound of Windows 2000 loading were mentioned.

In case none of these are available at this moment, consider the following websites: for the classical music lover: www.wpr.org classical music stream or www.iheart.com/live/Classical-WQXR-5611/

For the bird call lover: Cornell University’s Ornithology Lab has a searchable database for bird calls at http://macaulaylibrary.org/

For the poetry lover: www.poetryfoundation.org or http://www.loc.gov/rr/program/bib/poetryaudio/

Sound Tourism for Travellers: http://www.sonicwonders.org/ . Unfortunately for screen reader users, you have to click on flags that are not screen reader-friendly but I’ve already emailed the author, so let’s hope this great website becomes fully accessible soon.

I hope your Valentine’s Day is full of sounds you love.

I love singing that worship song that has the line “All are welcome in this place” in the chorus. But recent events have highlighted for me that the devil is in the details here.

Results of a study about Faith participation from a new poll of 3,839 members of the disability community were released last week by RespectAbilityUSA, a non-profit organization working to enable people with disabilities to have the opportunity to achieve the American dream. In addition to the nearly one out of five Americans who has a disability, an earlier study released by Laszlo Strategies found that 51% of Americans have a close friend or family member with a disability. 25% of the Jews with disabilities and their family members said that religion was “very important” in their life, compared to 41% of Catholics, 59% of Protestants and 80% of Evangelicals.

A National Organization on Disabilities study found that only 47% of people with disabilities attend church at least once a month, most likely due to architectural, programmatic, communication and attitudinal barriers. The Americans with Disabilities Act (ADA) was passed in 1990, it provided religious institutions with an exemption from the law if they did not accept federal money or services. Therefore many religious of all faiths have no legal obligation to serve or employ people with disabilities. This “pass” has hindered the implementation of simple accommodations such as accessible doors and ramps to enable people with disabilities to participate in religious services and programs.

The ADA gave religious institutions an exemption from a legal obligation on basic Civil rights, but that does not change what everyone should recognize as their moral, ethical, and religious obligation to do the right thing. Access means being able to get to the pulpit and the potluck, to the bathroom and the bulletin, to materials to teach Sunday school and to sign language interpretation of the youth program. www.disabilitiesandfaith.org gives many other examples of attitudinal and programmatic access.

Religions have long been known for their charitable works including many institutions for serving people with disabilities. A recent article talked about a Deaf Church in the Houston area celebrating its 90th anniversary. The Xavier Society for the Blind was founded in 1900. It provides a lending library of Catholic materials in alternate formats like braille and recorded materials to help blind and visually impaired clergy, religious and laity to participate actively in parish life. Many denominations have issued statements from national offices about full inclusion of people with disabilities.

Recently when I needed a book my parish was going to use in a Lenten study I looked first at Xavier Society’s lending library. Neither they nor any other source had the book available for loan. The publisher had it available for purchase on CD for three times the print version’s cost. I often tell people in my talks on disability issues that if they want to sign up to become a person with a disability, they’d do well to become rich as well because often accommodations cost more and there’s not some government program that will do it for you.

As I bemoaned my search for the Lenten book, others on listservs for blind Catholics I’m on chimed in with their access problems. Issues ranged from transportation to Mass to requests for bulletins and hymns in alternate formats that were unmet or just plain ignored. With the New Pope’s focus on including people with disabilities in Catholic life and institutions, it’ll be interesting to see what changes.

Religious bodies can make statements, but it’s individual people who make us welcome. It’s the religious education director who asks “would you help lead the Lenten study”. It’s the person at the publishing house who decides that it is the right thing to sell the book on CD to me for the same price as the print copy. It’s the fellow parishioner who is on parish council who lobbies that some of our money for charities go to Xavier Society because they publish the weekly Mass readings in braille so I can read Scripture at Mass. It’s the church secretary who sends me the electronic copies of the bulletin and the monthly newsletter at the same time as she sends them to be printed. It’s the author who sends me an electronic copy of his book and then follows through with Bookshare to make it widely available to print handicapped readers. It’s the kids who run up and ask if they can pet my guide dog before Mass who make her feel welcome.

When we’re paying attention, we each can make sure that all are welcome in our places of worship.

The house’s gutters are full of ice dams. Books I want to read are not available in accessible formats. Nobody is jumping up and down (yet) to give my new book national publicity. It’s cold enough that we’ve foregone some of our regular walks and Luna is acting a bit like a housebound toddler.

I know we’re not alone. When we were talking at a third grade last week, the teacher volunteered they’d had “way too many” indoor recesses. Friends at assisted living facilities who never complain are mentioning how much they miss the usual outings that have been cancelled because of the weather.

As I was trolling through my favorite newspapers on Newsline, I found an article in the St. Paul Pioneer Press about “Six Cures for Wintertime Parenting Blues” that sounded like it might just hit the spot as I try to parent myself and maybe Luna through winter. But when I got the article it turns out to be one paragraph and the rest was pictures I guess. So I’ll have to make up my own list. So far I have these, but additions are welcome:

  1. Read jokes like this one a friend sent: The young parish priest of a little village in the land of the Old Sod looked out his window one bright mornin’ and
    was amazed to see Jesus Himself walking up the street! Having preached about the second coming many times, the significance of what he saw was not lost on him, but for the life of him he didn’t know what the procedure was for when it actually happened. He called the Pope. Says he to the Pope, “You’re not going to believe what I am gonna tell ye’, but Your Eminence, Jesus is walking up the street of me little village this very minute. What on earth should I do?” The Pope thought a moment on the significance of what had just been revealed to him and replied, “Look busy.”
  2. Plant those narcissus bulbs I got last fall; they’ll be flowering by Valentine’s Day.
  3. Make soup; maybe corn chowder or oyster stew.
  4. Take a party of beverages and chocolate to friends living in an assisted living facility. Hearing about the winter grrrs going on there makes me know it could be worse.
  5. Read Mary Oliver’s Dog Songs. Poetry can give a whole new outlook on life.
  6. Plan food for Friday’s bridge and supper that has some kind of a tropical theme; maybe that’ll make me feel warmer.
  7. Listen to uplifting music like: http://m.youtube.com/watch?v=BWVyVMbSzM4 Alone Yet Not Alone (Song) Performed by Joni Eareckson Tada.

One of the highlights of the week is a friend reading me the “Street Scenes” column from our local newspaper (not on Newsline for the Blind) about local citizenry behaving badly and the law enforcement response to same. The local university’s student paper used to have a police blotter column of students behaving badly which was the first part of the paper most of us read. A December 19 Wall Street Journal article pointed out the second edition of Bozeman, Montana’s book on the same topic. A quick look at Amazon’s offerings showed several including a compilation by J. Leno. I checked availability in accessible format of this genre, and found none. So I sent a suggestion to the National Library Service to record at least one; time will tell if they make it happen.

Until that happens, if it happens, the following websites will have to slake my curiosity: http://www.daytondailynews.com/list/news/crime-law/police-blotter/aHdB/, http://www.mercurynews.com/crime-courts/ci_24695580/best-police-blotter-2013?source=pkg, http://bozemanpr.blogspot.com/.

In honor of Nelson Mandela, this blog chronicles recent experiences I’ve had of “ubuntu” — defined as, “I am, because of you.”

I’d argued eventually successfully with a local Senior Center to advertise that accessibility accommodations would be made if requested for a talk on my new book Occupying Aging. The talk went fine, but then in the discussion portion it was raised to a whole new level by the sharings of a couple in their late eighties. The man talked about going blind, deaf and developing dementia, but walking forward calmly into his new world firmly holding the hand of his wife of forty-some years. There was an almost audible pause in the room as all of us recalculated about if he can do that, what can we do!

Later in the week I was talking with kindergartners about blindness, braille and dog guides. One child asked how I knew where my dog was when we were at home and the harness was off. I explained that at first new dogs wear a bell but that only works for a little while because they learn to walk without jingling the bell when they want to do something bad. But I said, after a while I develop eyes in the back of my head just like their teachers have so I know what the dog is doing. One little boy blurted out: “No, that’s my mom”. A more concrete child argued “You can’t have eyes in the back of your head” and a teacher tried to explain that’s just an expression. I’m still laughing over the child’s “aha” experience that others might have his mom’s talent.

In my annual trip to visit family, there was the usual quota of extra airport screenings and cancelled and delayed flights, but there were many examples both with family and strangers of extra effort being made to make a joyful holiday. A worker at the airport stood and visited with me for a half hour about dogs at one thirty in the morning until my ride came. Luna let a tiny Dachshund cuddle up to her. My brother trekked clear out of security down to the pet relief area by baggage claim at O’Hare Airport and back through security with Luna and me so that Luna didn’t have to go too long between potty stops.

A wonderful holiday tradition in Eau Claire is the Give a Kid a Book program run by the Friends of the Library. During December new or gently used books are collected and then given out to thirty agencies to give to kids who might not be getting other books for Christmas. A friend and I always help with the book distribution at the Salvation Army. We were put in charge of the Christmas books and the dictionaries this year. She was sorting the Christmas books as to age level and reading out occasional interesting titles, like Zombie Christmas. Then she read one that really got my attention: Have a Crappy Christmas. Since the distribution was at Salvation Army and since in previous years Harry Potter books had given them fits, I thought this book needed to be tossed or at least buried at the bottom of the pile. So I asked my friend where was our team leader. She said the leader was across the room and busy. Then she wondered why I was having such a strong reaction to that book. She thought it would be fine for a family who liked to do crafts. Suddenly “crappy” morphed into “crafty” in my mind and I broke into joyful holiday laughter.

Hope you had a crafty Christmas and/or will have a happy healthy New Year full of Ubuntu.

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