This evening I started reading “The Ex” by Alafair Burke. It was just published today and my fellow crime novel friends are on long waiting lists at the library for it. I got it from Bookshare. Here’s the first sentence of their description in case you’re interested: “Twenty years ago she ruined his life. Now she has the chance to save it.” It’s so rare that being blind is an advantage, I just have to say WOOT!
I just finished reading A Step Toward Falling by Cammie Mcgovern. It’s a young adult novel about teens with and without disabilities trying to navigate hard situations including regrets, forgiveness, and trying again. Most of all it’s about the angst of rejection and being who you are anyway. The author gets a lot of the disability pieces right, sitting alone at the lunch table, trying to figure out if the non-disabled person is being truly friendly or patronizing, etc. There’s no quick fixes or happy ever after endings.
As I read it I remembered the loneliness of high school broken through by a few good friends. The book makes the point that that is a common experience because of rejection or feared rejection because of characteristics like being a jock, a nerd or having a disability. Teens reading it will be a bit comforted by knowing they’re not alone.
I’d like to write an epilogue reassuring the teen readers that It Does Get Better. As I set forth into a week of guest lectures, meetings, book clubs, meals with friends and a bridge game to keep me humble, I know I am useful and beloved in my world. Yes, it’s a struggle and sometimes I don’t feel the love, but it’s there. I noticed that one of the 2016 American Library Association Schneider Family Book award winners, The Unlikely Hero of Room 13B by Teresa Toten is dedicated to people who feel different knowing they are not alone.
The ending of this poem, “The Laughing Heart” says it better than I can:
your life is your life.
know it while you have it.
you are marvelous
the gods wait to delight
I despise asking for and taking help. Having been blind since birth, you’d think I’d be an expert in accepting help (at least disability-related help)! If you define expert as someone who’s done something often and thought about it a lot, then maybe I am. I did my dissertation study on altruism and a friend made me a wall hanging with “ask” spelled out in braille on it.
However, I’m definitely one of the 70% of people that an executive coach, Nora Bouchard, says could have used help in the last week but didn’t ask for it. As I age and watch friends age and need more help, I think it’s time to turn the spotlight on the fine art of asking for help and maybe rearrange my attitude a teeny bit!
Why are we so reluctant to ask for or even accept help? Pride? The myth of “I can do all things”? Shame when we can’t? Fear of being slimed by patronizing help? Fear of losing control? “More blessed to give than to receive” rings in our ears? Difficulty articulating what we need? Fear of getting “help” we don’t want along with help we do want? All of the above!
It’s easier for me to ask or accept help, if I know I have something to trade, know the giver well enough to know they’re not looking down on me as they reach out, knowing someone else is depending on me to accomplish this chore, or if the ask is a small one.
Using Bookshare, www.bookshare.org I was able to skim through hundreds of books with “help” in the title. Lots of self help titles promising help for everything from training your dog to taming your fears. The three I found the most helpful with their foci on the asking part of the process were:
- Help Thanks Wow by A. Lamott
- The Art Of Asking: How I Learned To Stop Worrying And Let People Help by Amanda Palmer and Brene Brown
- Mayday: Asking for Help in Times of Need by M. Klaver
Amanda Palmer is a musician and a performance artist who espouses radical openness in asking and giving help. She’s crowd-funded her recordings and tweeted her fans for all kinds of help for herself and others. She shares her struggles with asking and taking help particularly from her husband. A good read if you’re wanting to be inspired!!
Anne Lamott writes about prayer in such a funny, realistic, approachable way that you hardly realize you’re doing “spiritual” reading. Her first prayer is “Help” which is a great reminder to me that asking my Higher Power for help could be a great place to start!
The Klaver book breaks asking for help into a seven step process. The seven steps are:
- Name the need
- Give yourself a break (self-compassion and believing you deserve it)
- Take a leap (revving up your confidence and faith)
- Be grateful and gracious whether request is met or not
- Listen differently to what you get
- Say thanks
Inspired by my reading, I asked my Facebook and Twitter followers for their top tips for how to ask. I got several great replies which tells me I’m not alone in this struggle. Here are my tips from one struggler to another:
- Figure out what you need exactly.
- Remind yourself you’re not alone; half the people over sixty-five have a disability, so will need disability-related help.
- Remind yourself that even Jesus asked His disciples to wait and watch with Him.
- Remind yourself that you’re giving a gift by letting yourself be helped because people like to help and somebody has to be the receiver! It’s your turn now!
- Reframe (at least in your own mind) or offer a trade: “If you give me a ride, I’ll buy you a cup of coffee”
- Strategize how that person can probably most successfully meet it. For example, “point my finger toward the bank building” rather than asking “where is the bank?” and them pointing or saying left when they mean right.
- Say a happy “thanks”, not an apology for the need but a strong thanks for meeting it.
- Keep helping and asking so the balancing act can go on between helping and being helped.
What you (when you’re in the role of the giver) can do to help:
- Offer help freely “May I help?” rather than “Do you NEED help?”
- Point out that you benefit from my company; e.g. “I have to go and would like company. Want to ride with?”
- Listen to what I ask for instead of dishing out what you think I need.
Last January I challenged the members of a book club I’m in to read fifteen “spiritual” books in 2015 and I would do likewise. The ladies of this book club are about twenty years older than me and aren’t constantly trolling book and spirituality websites for possible reading matter, so it seemed fair to me to stack their total “spiritual” reading against mine. They love me dearly, so cheerfully agreed to the challenge.
We agreed “spirituality” was in the reader’s opinion. However, it could include fiction, poetry or nonfiction that made the reader feel yearning, wonder, gratitude, dealt with life’s big questions or inspired us to be our best selves.
I love Tom Clancy, Frederick Forsythe and other thriller writers. And I love a good gritty spiritual book that puts me in touch with the thrill of being fully human and fully alive. My “spiritual” thrillers for 2015 include biographies and memoirs, a few self help titles and a couple novels.
- Encore by M. Sarton a journal of her eightieth year. The wonderful things about getting old she states are “the freedom to be absurd, to forget things and to be eccentric”.
- The Priority List by Menasche is a memoir by a teacher dying of cancer including a road trip to connect with many former students.
- Accidental Saints and Pastrix by N. Bolz-Weber are wonderful memoirs by an irreverent Lutheran pastor—an outsider ministering to outsiders.
- Until I Say Goodbye by S. Spencer-Wendel is the account of the last year of life of a woman with ALS. She lives the Dr. Seuss quote: “Don’t cry because it’s over, smile because it happened”.
- I Am Malala by M. Yousafza powerfully describes the growing up of the Nobel prize-winning young Afghan woman champion of education for women.
- Church of 80% Sincerity by D. Roche deals forthrightly with his disability and people’s reactions to it Many cogent reflections including “sometimes your gifts and flaws are the same thing.”
- A Smile as Big as the Moon by J. Layden chronicles the work of a special education teacher and his students who make it to NASA’s Space Camp.
- Boys in the Boat by D. Brown is the inspiring story of the U.S. Olympic rowing team that showed what poor American kids can do at the 1936 Olympics in Germany.
Several books challenged me to think more deeply about how I give:
- Treasure Principle by R. Alcorn points out we’re just the money managers!
- A Path Appears by N. Kristof and C. Wudunn, Doing Good Better by W. Macaskill and Charity Detox by R. Lupton give good questions to check on and think about before handing out your money. They made me realize I want a range of charities on my list, some of which try to solve problems and some of which meet immediate needs.
I also did some serious reading and soul-searching on the flip side of giving; e.g. asking for help. These three books were especially helpful:
- Help Thanks Wow by A. Lamott
- The Art Of Asking: How I Learned To Stop Worrying And Let People Help by Amanda Palmer and Brene Brown
- Mayday: Asking for Help in Times of Need by M. Klaver
- The Heart of Things: a Midwestern Almanac by J. Hildebrand was a good change of pace for me, with its focus on noticing the good things in creation like turtles.
- Being Mortal by A. Gawand talks about how end of life care should maximize meaningful events and doings for people rather than just extending life by treating things if the person is going to feel horrible. One of the novels I read, Bettyville by G. Hodgman was about a young gay man from New York City who went home down South to care for his aging mother giving her the kind of life talked about in Being Mortal. The interactions between mother and son as they came to terms with each other’s lives made it a thought-provoking read.
As President Obama said: “When I think about how I understand my role as citizen, setting aside being president, and the most important set of understandings that I bring to that position of citizen, the most important stuff I’ve learned I think I’ve learned from novels. It has to do with empathy. It has to do with being comfortable with the notion that the world is complicated and full of grays, but there’s still truth there to be found, and that you have to strive for that and work for that.”
Three other novels worth mentioning because of their insightful depiction of characters were: The Museum of Extraordinary Things by A. Hoffman, Jesus Cow by M. Perry and Somewhere Safe with Somebody Good by J. Karon. Christmas in Harmony by P. Gulley rounded out the year of novels with well drawn characters. I have to mention All the Light We Cannot See by Anthony Doerr. Although it won a Pulitzer, I thought the blind female character was poorly drawn and riddled with stereotypes.
As Mary Oliver says in her poem “On Thy Wondrous Works I Will Meditate”, “O Lord of melons, of mercy,…though I am not ready or worthy, I am climbing toward you.” Books like these help me climb. Happy climbing in 2016! I welcome your recommendations for thrilling spiritual reading; one can never have too many books on a must read list.
The Mighty website, www.themighty.com has received some negative press from within the disability community in the last few months. The website describes itself as “Real People, Real Stories We Face Disability, Disease and Mental Illness Together.” It’s been critiqued for parents oversharing about their kids with disabilities (photo of a teen in diapers, etc.) and some posts painting parents as heroic and people with disabilities as cloyingly inspirational. Also bloggers who have disabilities have reported having their posts removed or not used. On the other side, parent posters have felt scolded by people with disabilities. If you’ve missed this tempest, a good post to read about it is “Who Should Speak for the Disability Community?” at http://wordsiwheelby.us3.list-manage.com/track/click?u=9334e4131b35335c80067007d&id=fa86b62a58&e=90b8279ff5.
I’m troubled! It reminds me too much of Congress; groups of people fighting each other and ending up in gridlock instead of working together on things they can agree on. To me, the answer to “Who should speak for the disability community?” is each of us who is touched by disability, whether it is ours, a family member’s, a friend’s, etc. Since one out of five people has a disability and one out of four families has a family member with one, there are a lot of voices.
I hope it’s a chorus where all are welcome. Having lived through fourth grade music where the teacher told me not to sing, I don’t wish to silence anybody! You might sing in a different key than I do—go for it.
The hardest part of this “all are welcome” approach is when people try to say one writer is righter than another. I’ve seen this argued in the blindness community with regard to dog vs. cane, braille vs. large print for partially-sighted, two competing consumer organizations, etc. My usual answer is “both and” or “it depends.”
I hope the editors of The Mighty are big enough to publish many viewpoints, some of which may conflict. I hope those of us in the disability community can disagree with each other respectfully, assuming the other person’s view is right for them, even if not right for us. I hope we can ask each other questions to better understand each other’s view, without having it perceived as arguing or judging. Let’s work together for better services, more public understanding and fuller inclusion of people with disabilities in the good life. Congress, watch us!
“The longest journey you will ever take is the 18 inches between your head and your heart.” – Thich Nhat Hanh.
This quote by a Buddhist monk summarizes the journey I’m taking this Advent, it seems. Amid all the volunteering, gifting, shopping and partying, I’m trying to wait in hope. A few examples:
- Watching hundreds of students pet my 12 year-old retired guide dog Ivanna and Luna at the library—Luna and Ivanna meet each individual differently and the students left refreshed to face finals.
- Delivering pet food and supplies to thirty-five households
- Volunteers contribute a little present colorfully wrapped for each household
- A friend sews catnip toys for all the cats
- A volunteer brings me a plate of Christmas cookies
- A pet food recipient gives Luna a treat—most of all people took time to make it happen.
- Mary Oliver’s poem, “Making the House Ready for the Lord” pointing out as we welcome all creatures, we are welcoming the Lord inspires me to be more attentive to the people who come visiting.
As an Advent carol I’d never heard before “People, Look East” by Eleanor Farjeon says:
Vs 1: People, look east.
The time is near
Of the crowning of the year.
Make your house fair as you are able,
Trim the hearth and set the table.
People, look east and sing today:
Love, the guest, is on the way.
Every year I read a couple Christmas books. This year’s were: Christmas in Harmony by P. Gulley and On Strike for Christmas by S. Roberts. In the first of these, the Quaker pastor of Harmony, Indiana must deal with a bull in a China shop kind of parishioner who organizes a progressive nativity scene, wondering if a 4-slice toaster is too extravagant a gift for his wife and other complications of the season. In the second book, the women of the knitting circle decide they’re tired of doing it all, the parties, the decorating, the cooking, etc. and go on strike. In both books Christmas spirit and tradition make for happy endings, no surprise there!
As I was trolling around looking for one more heartwarming Christmas story, while babysitting my retired guide dog, I came upon Christmas with Tucker by Greg Kincaid, a coming of age story complete with an Irish setter.
Happy Advent and happy reading—I’ve got to go see how the noble Irish setter makes everything okay!
I just got back from a fabulous volunteer vacation in Phoenix. Somebody has to go to Phoenix where it’s always sunny and the temperature during the day was in the sixties, right?
My volunteering was not building a house for Habitat or restoring habitats for cactus wrens. It involved doing what I know how to do, guest lecture university students. I lectured four classes and gave two interviews about journalism about people with disabilities. At the end of the day I got to present the award for excellence in disability journalism to Heather Vogell of Pro Publica for a piece she wrote about the over 267,000 per year uses of restraints and seclusion for children with disabilities in U.S. schools. This was the third year of the award and it received over sixty entries by all sorts of news media. It’s run by the National Center on Disability Journalism at the Walter Cronkite School of Journalism at Arizona State University. They have a great website www.ncdj.org complete with a style guide on language about disabilities, sources of information on disability issues and examples of well done stories including Heather’s.
When I was talking about disability journalism with students I talked about the poor stories that treat people with disabilities as objects of charity, people to be cured or put them up on a pedestal in stories that activists call “inspiration porn” where they’re noble, saintly creatures who climb mountains in their wheelchairs on a daily basis. I asked these young journalists to ask themselves three questions about the pieces they write, record or video:
- If it was about you, would you like it or be ready to gag?
- How would any event you wish to report on be different if you were blind, deaf, a wheelchair user or had any disability?
- If this story talks about a problem, does it also talk about possible solutions?
Then of course I had to talk about accessibility of the story, be it captioned for the Deaf, audio described for people who are blind and pictures alt text tagged with a short description for blind users of the Internet.
The students were attentive and asked great questions. Every time I do this I learn about the world of journalists. One class was trying to write five word headlines that are both inviting and represent the content of the story. We threw around should they call me a “blind psychologist” or not and we ended up concluding it depended on the point of the story whether my blindness was relevant or not.
I was treated very well, accompanied from place to place by a friendly staff member, fed well and made to feel I was making a valuable contribution with my day of service. Of course Luna made numerous friends and said it was worth it to endure two ten hour days of travel. The university housed us in a very nice hotel with beautiful green grass within ten feet of our room door for her pooping pleasure—not an easy thing to find in Phoenix! The fact Luna considered herself on vacation was shown by her stretching out luxuriously on the king-sized bed, something she never does at home.
We came back to Eau Claire on Giving Tuesday. One friend met us at the van from Minneapolis and gave us a ride home and another had tuna noodle casserole hanging on the door for my dinner. While I was in Phoenix I saw a woman who had read to me (as a volunteer) when I was in grad school forty years ago. We’d stayed in touch occasionally and it was a highlight of the visit to see her in person. We both commented on how you never know where volunteering will take you.
I’m getting ready to travel to my brother’s house in Chicago for the weekend before Thanksgiving and to Arizona the weekend after Thanksgiving to give out disability journalism awards. My brother is turning seventy, so we’ll be celebrating that too. Judith Viorst, May Sarton and Gloria Steinem have written fine books on that, but for him, a couple railroad books work better!
When I looked for relevant reading matter on Thanksgiving, in addition to a myriad of cookbooks, I found lots of earnest explanations for kids about the first Thanksgiving. There are a few chick lit confections where the lady gets her man on Thanksgiving. There are also a few books of Thanksgiving poems, including two patterned after “Twas the Night before Christmas”. Need a themed murder mystery, try Dead Hot Shot (Loon Lake Fishing Mystery #9) by Victoria Houston which takes place in Wisconsin or several of the Murder She Wrote series.
A slim book of riddles includes:
What are unhappy cranberries called?
Why did the Indians whisper?
Because the corn has ears.
In case you’re curious, there’s Balloons over Broadway: The True Story of the Puppeteer of Macy’s Parade by Melissa Sweet. Sarah Gives Thanks by David Gardner and Mike Allegra narrates how during the nineteenth century, Sarah Josepha Hale dedicated her life to making Thanksgiving a national holiday.
Breathing Space by Heidi Neumark is a memoir by a Lutheran pastor full of thanksgiving for her congregation and the joys, sorrows and struggles they share.
This little piece by Ralph Waldo Emerson about sums up my feelings on this wonderful holiday:
For each new morning with its light,
For rest and shelter of the night,
For health and food,
For love and friends,
For everything Thy goodness sends.
Rev. Peter Bauer in his November 13 article in the Huffington Post, put my wishes for all of us this way: “May this season of Thanksgiving be a time in which we can learn from the Pilgrim way of life. How we can become grateful and accepting of life and one another and how we can stay connected as communities working together to improve the lives of all.”
And for the day after Thanksgiving, instead of shopping, you could relax with a pumpkin latte and enjoy Christmas Sucks: What to Do When Fruitcake, Family, and Finding the Perfect Gift Make You Miserable by Joanne Kimes.
I was asked to lecture some women’s studies classes about ableism. It caused me to do a lot of thinking about how I could talk about the topic without blaming and shaming the people I want to recruit to the cause of working toward access for people with disabilities to the good life.
I try to make my talk fun and accessible by talking about common experiences like playing Trivia Crack and highlighting small things they are doing to be accessible, like not raising their hands to ask questions.
I talked about what ableism is: “ Ableism is the practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. Ableism – a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.” From http://www.stopableism.org.
I used a few trivia questions like “Name two U.S. presidents who had disabilities.” and “When was braille invented?” to help the students begin to notice the invisibility of the 19% of Americans who have a disability. After talking about disability words and asking them to use accurate language (“blind” not “visually challenged”), I talked about images and stereotypes. When asked to choose, they overwhelmingly picked the new access symbol over the old. I talk about three models of disability:
- Moral: disability equals sin; be ashamed and hide the disability.
- Medical: fix it or teach compensatory skills like braille and assistive tech.
- Minority: Disability is a part of life; embrace it.
I described the realities of disability life, which I’ve summarized in the first five letters of the alphabet:
- We have to ask/advocate for what we want and need.
- There’s a bubble of isolation around us.
- It costs more to have a disability.
- We experience discrimination in many ways.
- The everydayness of disabilities; dealing with unequal access and people’s attitudes are everyday adventures for me. They’re like death and taxes; they’re inevitable.
Then I launched into what they could do about ableism. I covered four reasons why they should do something:
- Pay it forward because we’re a joinable group.
- Nondiscrimination is the law.
- It’s the right thing to do.
I suggest hanging with people with disabilities. Realize you’ll be uncomfortable, acknowledge it, and go out of your comfort zone. I ask the audience to look around their good life, figuring out where people with disabilities aren’t at the table and asking why and working to change it. Then I wrap up with things you might gain by becoming an ally, like a new perspective on daily events, valuing interdependence and a few good laughs at how awkward we all are with each other’s individualities.
I need some kind of altar call, so this time I tried “name the movement”. That was met with a resounding thud. So I’m left wondering if I changed hearts and minds. If the prof passes on journal entries from the students, that will help me know. If they stop me on campus and chat, that’ll be a good sign. One has already passed on my name to her mom who needs a speaker in her school district. Luna got immediate positive feedback from students who miss their dogs and were glad to meet her. I guess I’ll call the talk “Only You Can Stop Ableism” until a better title comes to mind. All entries considered!
In 1964 Congress designated October 15 as White Cane Safety Day. The law says: “An operator of a vehicle shall stop the vehicle before approaching closer than 10 feet to a pedestrian who is carrying a cane or walking stick which is white in color or white trimmed with red and which is held in an extended or raised position or who is using a dog guide and shall take such precautions as may be necessary to avoid accident or injury to the pedestrian.”
Some tips when approaching a blind person:
- You don’t need to shout.
- Ask if the person needs help, don’t just assume they do. Many blind people are perfectly capable of getting where they need to go without help.
- If there is a lot of street noise, gently touch the person on the arm to let them know you are speaking to them.
- If you are giving directions – don’t point. Or say “Over there.”
- If a person does need help, offer them an elbow they can grasp. Remember to be aware of obstacles they can’t see. They’re trusting you when you lead, so be conscientious.
Now here are three questions and answers about the law, just for fun:
Q: Shouldn’t I just honk instead?
A: Only if you want to raise my blood pressure because I think I’m going to be run down.
Q: What if it’s a black dog instead of a white cane?
A: Law still applies. They’re trained, but you’ll be the one who gets the points on your license and has to clean up the mess if my guide dog and I become your hood ornament.
Q: Why do some white canes have red tips?
A: Good for you for noticing! They have red tips to shoot death rays at those who don’t stop.
All kidding aside, thanks for observing White Cane Safety Day every day of the year.