Monday, December 24, 2018

The Misadventures of the Author of THE MISADVENTURES OF MISTLETOE MOUSE

Alexander Pope wrote in his poem, “An Essay on Criticism,” ‘Fools rush in where angels fear to tread.’  In December of 2016, I rushed to join other writers who live with blindness and low vision and self-published my book, The Misadventures of Mistletoe Mouse.   We were assured by a chapter on self-publishing in Getting Your Book Published for Dummies (2000) and articles in issues of the monthly magazine, The Writer, that self-publishing a book can be a very positive and profitable experience.  I soon learned that the Create space website did not work with screen-reading software.  While using it is free, the services of a graphic designer and editor that are needed to upload a book are expensive.  A modest number of books sold to family and friends as I learned that I knew even less about marketing than I knew about book publishing.

In 2016, Local independent bookstores were friendly to authors of self-published books; but in 2017, many owners and managers decided that Amazon was trying to put them out of business.  They no longer would rent shelf space for books published by Amazon on consignment or hold events for these books in their stores.  Writers in more friendly locations soon learned that they would need to do their own marketing, publicity, and bookkeeping or hire professionals.  They also needed to read Guerilla Marketing that is available in audio from Learning Ally to become aware of the social media marketing skills being used by writers and traditional publishers who are fully sighted.

In 2017, local print-on-demand publishers, libraries, and traditionally published writers also started to self-publish books and competed with Amazon Create space.  They were demanding reviews for all books from people with credentials such as MFA or ALA affiliations.  Competition became so fierce that in 2018, the Society of Children’s Book Writers and Illustrators provided members with a list of approved publishers.  Amazon Create Space was not on that list, and members of the society could not have their Amazon Create Space self-published books considered for awards and other benefits of membership.

The misadventures I have experienced are minor compared to those shared by traditionally published writers in Scratch:  Writers, Money, and the Art of Making a Living by Manjula Martin (2017).  The NLS annotation says, “This book has Thirty-three essays and interviews about making a career and living from writing. Contributors include Cheryl Strayed, Susan Orlean, Alexander Chee, Yiyun Li, Roxane Gay, Malinda Lo, Nick Hornby, Daniel José Older, Jennifer Weiner, and more. Topics cover breaking in, writing fiction and nonfiction, budgeting money, and everyday practicalities.” 

What is not mentioned in Scratch is that Santa is not the only one who will be checking to see if they are being naughty or nice.  The IRS will send royalty information to case workers at local Department of Human Services’ offices.  Low income writers who receive benefits will be required to submit proofs of royalties and expenses that are listed on Schedule C tax forms.   More information about how this works can be found in Automating Inequality:  How High-Tech Tools Profile, Police, and Punish the Poor by Virginia Eubanks. (2017) 

For over 50 years my poetry and creative nonfiction have been published in magazines, journals, newspapers, anthologies, and online; however, these experiences and a creative writing class that I completed through the Hadley Institute for the Blind and Visually Impaired that is taught by a lecturer at Loyola University did not prepare me for the misadventures I encountered when I self-published The Misadventures of Mistletoe Mouse.  There are something’s that we learn only by taking risks and through trial and error.  Do I regret self-publishing this book?  Of course not.  There is nothing more thrilling than seeing a book that you created from cover to cover in print and autographing copies for children.  The rewards of the self-publishing experience have outweighed the rejection, humiliation, and public exposure of my failures and weaknesses as the book needed four print-on-demand editions as part of its writing process-the dues some writers have to pay whether they publish their own books or are traditionally published.

Since it was first written over 30 years ago for my children, The Misadventures of Mistletoe Mouse has been my go-to book when life has not gone as I planned.  It is a fantasy whose main characters work to make terrible Christmases terrific.  The problems I addressed 30 years ago are minor compared to the forest fires, hurricanes, tsunamis, earthquakes, government shut-downs, divorces, single parent households, poverty, homelessness, and immigration that children are living with today.  In 1865, a realistic book of fiction was written for children, Hans Brinker:  or The Silver Skates by Mary Mapes Dodge.  Our books give children and their families the tools to face and overcome obstacles while providing a brief escape from them.

For more current information about publishing and self-publishing, read “Write Your Book in 2019” in Writer’s Digest Magazine (January 2019) available in audio on BARD, the National Library for the Blind and Physically Handicapped website, as the magazine of the month of November 2018.  Experience a writers’ retreat in the romantic holiday novel, The Mistletoe Inn by Richard Paul Evans.  If you are looking for hope, listen to “Someday at Christmas” performed by its singer and songwriter who lives with blindness, Stevie Wonder.  

Merry, Merry Christmas!

Tuesday, November 27, 2018

Being Thankful as Low Vision becomes more Inclusive

 In a previous post, the word, "blind," was mentioned as a deterrent for people with vision impairments and newly diagnosed patients who are seeking help because the word, "blind," still means total blindness in most people's minds.  The National Federation of the Blind, the Xavier Society for the Blind, and other organizations that use the word say on their websites and brochures that they are inclusive and provide services to the approximately 10% of the “blind” population that is totally blind and the 90% that is legally blind or visually impaired but do not meet the requirements for statutory blindness services or benefits.  Only the Hadley Institute for the Blind and Visually Impaired (formerly the Hadley School for the Blind) and Learning Ally (formerly Recordings for the Blind and Dyslexics—RFB&D) have changed their names and made their services more welcoming.

An even more exciting trend is taking place as low vision is becoming lower.  I thought as my visual acuity decreased far beyond what I considered low vision that I was no longer qualified to write about the subject or attend low vision support groups.  Then, to my delight, a new member was welcomed who is almost totally blind--not from any eye condition but from an operation to remove a brain tumor.  I have been learning how to live with vision loss for many decades from people who are totally or nearly totally blind.  This newcomer, a professional woman who is living with her unexpected disability, is giving living with low vision a whole new dimension as she adjusts to her vision loss.  Unlike so many people who must learn to live on a modest income, she has hired an accountant and a part-time administrative assistant to help her perform her personal and financial duties.  She uses a fleet of volunteers that she met at book clubs she attended.  They provide door-to-door driving services that are scheduled using signup software. 

As "low vision" has become more inclusive, the newly renamed Living with Low Vision Support Group at The University of Michigan's Kellogg Eye Center now has a newsletter that tells patients via email what to expect at their monthly meetings or changes in services.  There are balance classes that include exercise routines, private lessons with a part-time orientation and mobility instructor, and discussions where patients are encouraged to share their feelings.  Support group topics are also moving beyond eye diseases and current research or adaptive tools to legal concerns.  Two lawyers talked with patients who attended the November meeting about
Social Security, Social Security Disability, and Supplemental Security Income.

It is much easier to love what is left while living with low vision when activities are more inclusive and more fun.

 

Sunday, July 1, 2018

From Getting Over It to Getting On with It

I am inspired by writers like Francisco Jimenez who wrote The Circuit: Stories from the Life of a Migrant Child, Reaching Out, Breaking Through, and Taking Hold:  From Migrant Childhood to Columbia University and Haven Kimmel who wrote A Girl Called Zippy and She Got up Off the Couch.  Both Jimenez and Kimmel’s mother struggle to earn their college degrees and then were hired to work in their chosen fields.  The memoirs that are written by people who live with blindness and visual impairments often have different endings that required career changes, self-employment, part-time jobs that pay a minimum wage, or no job at all as they can be counted among the 70% of the sight impaired who are unemployed.  Getting over their disappointment and getting on with their lives is a display of their courage, self-discipline, and ingenuity.

While being unemployed or underemployed, many people learn new skills such as blogging and serve on a variety of boards, committees, and groups.  These activities are rewarding and valued but may lead to burn-out when training for a different career and starting a business require a new schedule and a new plan.  I am over-committed now that writing has become my business instead of my hobby, and I’ve learned while reading Laughing Matters, a book about writing by Larry Gelbart, that retooling is no laughing matter.  I am learning how to run a business, how to write a business plan, how to perform in public as a poet and songwriter, and how to manage a home office.  There don’t seem to be enough hours in a day as I not only work at writing and selling manuscripts but also look for employment or funds for writers to supplement my income.

Some things have to go starting with volunteer activities and blogging.  I’ve shared all of the information I have with the Hadley Institute for the Blind and Visually Impaired and the Xavier Society for the Blind.  So many other people are joining their advisory groups that my services will not be missed.  I have also said all that I have to say about blindness and visual impairment issues during the five years that I have been writing this blog.  The list of people who are writing memoirs about their lives and vision loss is growing every day.  Two interesting books are Compass Points and In the Country of the Blind by the prolific writer, Edward Hoagland who shares his experience of losing his sight and then regaining it after surgical procedures.  His books give hope too many who live with eye diseases that were once considered inoperable.

One of the obstacles I had to get over during my job search was the human resources administrator in higher education who told me that a part-time lawyer from another country said it is a violation of a student’s right to privacy for a blind or visually impaired teacher to use a reader or a grader.  Not only was this proven to be incorrect information, but computer technology that allows courses to be taught online have almost eliminated the need for paperwork in a classroom.  When such tools were not available, teachers could also ensure their students’ privacy by assigning them numbers to put on their work rather than their names. 

A greater source of frustration for blind and visually impaired job seekers is the lack of accessibility of online application forms and job search websites.  The diagnosis of a potentially blinding disease, treatment, and training can take many years.  Today’s employers are looking for either new graduates or people who have recent experience.  Applicants with vision loss might also have needed to change careers and have more education than the online application software is looking for.  Candidates who are considered “overqualified” or lacking recent experience will not be contacted.  If an employee contract and wages are based upon level of education, a candidate who is considered “overqualified” will cost the institutions more than they want to pay.  As an educator who attended a high school where most of the teachers had their master’s degree because the high school was shared by a community college at that time, I do not understand how any teacher would ever be disqualified for a job because he or she was “overqualified.”  Recently a segment appeared on the NBC Nightly News that said schools were looking for minority candidates to teach and serve as role models in the public schools.  Teachers who are living with disabilities were not mentioned or being recruited.

I wish you the very best as you get on with your life and loving what is left.

 

Sunday, June 24, 2018

A Narrow Mind is not Covered by the ADA (American's with Disabilities Act)

A narrow mind is not covered by the ADA (Americans with Disabilities Act), but the National Library Services for the blind and Physically Handicapped and Learning Ally have books to help heal the hurt that comes from being bullied or verbally abused as most people who are living with blindness, low vision, and other disabilities have experienced as children or adults.  Narrow minds can be found anywhere from in the home, in the community, and in the media.  Bullying of people who live with disabilities is so rare that public demonstrations of it are especially repugnant.  It is most difficult to observe when people who are living with disabilities are bullying or verbally abusing each other.  Sometimes it is not clear where teasing ends and bullying or verbal abuse begins.  If you or someone you know has been bullied or verbally abused or you are not sure, here are some resources that will help: 

The Verbally Abusive Relationship:  How to Recognize It and How to Respond

A Complaint-free World:   How to Stop Complaining and Start Enjoying the Life You always wanted"

The Secret of Overcoming Verbal Abuse:  Getting off the Emotional Roller Coaster and Regaining Control of Your Life

Will I Ever be good enough?  Healing Daughters of Narcissistic Mothers

You Can't Say that to Me:  Stopping the Pain of Verbal Abuse, an 8 Step Program

 

 

Monday, May 7, 2018

You don't need Perfect Sight to be Observant or Helpful

 When the men and women arrived with the fire truck and the ambulance, I met them at the door.   I don’t remember which of them looked at me as I carried my white cane and said, “You are observant.”  What I had observed without needing to use any sight was the sound of my upstairs neighbor crashing to the floor and moaning.  When I heard more moaning, I quickly changed out of my pajamas and grabbed my phone, keys, and cane.  The door was open, and while I could not see well enough into a darkened room to know what had happened, I was able to get enough information to call 911.  The dispatcher asked me for more information, but I also added directions since there are two doors to the building.  One was closer.  While I was on the way down to meet the paramedics, the grandson of another neighbor asked if there was something he could do.  I suggested that he go in and talk to my upstairs neighbor and be comforting.

Later in the day when I had time to reflect on the morning’s events, what stood out was the remark, “You are observant.”  People living with any level of low vision must be observant and use all of their other senses.  They do not have super-powers to make up for the vision loss; they are just more aware of their surroundings.

If I were to name one skill that has improved as I have lost some of my vision, it would be problem solving.  Problems will be solved in one of three ways:  by me, by me with adaptive products or technology, or by other people who are assisting me.  I have observed that the newer the diagnosis of a potentially blinding eye disease, the greater the likelihood that a person has little or no information that could help with problem solving that requires products, technology, or assistance.  I met someone who has been diagnosed with macular degeneration and has experienced some vision loss.  This person was reading audio books via Audible and complaining about the cost for someone on a limited income.  This person now has a Talking Book machine from the National Library Service for the Blind and Physically Handicapped and is enjoying many books free of charge.

I also observed that people were calling a Catholic radio talk show and hearing the titles of books that were being recommended by the host.  I called the show to let listeners know that many titles were available in Braille, large print, and audio formats from the Xavier Society for the Blind.  There was no time left to add that more materials could be found at Learning Ally, and the National Library Service.  Magazines and daily newspapers are also available from Newsline from the National Federation of the Blind.  Stand-alone scanners and scanners attached to computers that have screen-reading software can also read regular type including junk mail.  Google searches will provide web addresses, 800 numbers, and contacts for information on any eye disease and treatment.  People who cannot use the Internet, can get help from their local reference librarian or their State Library for the Blind and Physically Handicapped.

It is much easier to love what is left while living with low vision when you are able to participate and stay well-informed about current events and popular culture.  People who live with blindness and vision impairments are no longer just observers.  They are judges, professors, customer service representatives, writers, publishers, social workers, musicians, singers….

Thursday, April 26, 2018

Away with Words?


Thanks to blogs, reality TV, and reality books, suffering in silence is becoming obsolete.  People like me generally prefer going off alone to a wilderness or down into a cave when we don’t feel like putting on a happy face or stuffing it.  I am sure that you would rather not have heard anything I had to say or write during the past year, a fact my family would readily confirm.

When I finally emerged from under my shell, I noticed books where their authors had also reached the point of living with chronic or terminal illnesses that might require that they cope (my least favorite four-letter word when grief reaches the anger stage).  Just as I discarded the word, “accept,” in “The Serenity Prayer” (see previous post, “God Grant Me the Serenity to Adapt to Those Things I cannot Change”), other writers were throwing out entire sentences, verses, and myths.  Two books in this new genre are Half Truths:  God helps Those who Help Themselves and Other Things the Bible doesn’t Say and Everything Happens for a Reason and Other Lies I’ve Loved.

So what is there to do when there are no trite platitudes to fall back on?  I have always followed the advice of Norman Cousins who wrote in Anatomy of an Illness that laughter is the best medicine.  A good sense of humor is especially necessary when The Bible does say that a merry heart has a continual feast, but that feast must be gluten, dairy, soy, and pizza free.

The current solution to all of our living challenges is mindfulness, and major medical centers have workshops, seminars, and private lessons to learn techniques for “staying in the moment.”  I am a perpetual problem solver who is always planning or thinking ahead to make sure all ducks are in a row.  Mindfulness and staying in the moment once achieved was then putting me in a dream state where my creative mind wanted to produce great works of art to sacrifice on the road to rejection known as publishing.  I found, however, my own solution to my consistent mindlessness:  Woody Allen.

Yes, I learned boys and girls, there is a reason why I was forced to read Shakespeare in high school and college and a reason why other people read Woody Allen, and at some time in life we just might need them.  Lady Macbeth’s line, “Out!  Out!  Damn spot!” is a great response to the discovery of a polyp or lump by a doctor.  Woody allen’s books such as Mere Anarchy require extreme diligence moment by moment if you don’t want to sit there gasping, “What did he say?” after just about every word.  Finally, a writer who can really make me sit up and pay attention.

Chris Harris is another writer who has a way with words that is so clever that I have no interest in doing away with them.  In his book, I’m Just No Good at Rhyming, he takes trite “words of wisdom” and turns them into light verse for children of all ages.  In “Tis Better,” he debunks the idea that it is better to give than to receive unless it is the first punch.  “Other titles include Nothing is Impossible,” “Sometimes I don’t Want to Share,” “Fight Fire with Fire,” “Live each day like It’s your Last,” “Good Things" (Come to those who wait), and “The Loser’s Cheer.”  My favorite Harris verse, ”Two Roads,” spoofs Robert Frost’s “The Road not Taken” whhich, if followed, can lead us to some pretty shady medical practitioners, supplements,  business opportunities, and 0% interest credit cards.

I grew up with the words, “If you don’t have anything good to say, don’t say anything.”  I now extend that to “If you don’t have anything to say, don’t say anything.”  If you are close, a touch or a hug is comforting.  If you are at a distance, a card via snail mail or e-mail, an email with a link to a beautiful song, digital or real flowers, or gift cards with a simple line, “Thinking of you,” is also likely to produce the warm and fuzzy feelings you want to share.  There are times when silence is not golden as we have been told it is.  Silence feels like rejection and abandonment to people who are living with chronic or terminal illnesses.  Sometimes it seems as if technology is doing away with words and reducing communication to graphics and grunts

Before I end this post, I want to share one more bit of verse to what other writers have deemed nonsense:  “God helps those who help themselves.”  With a bit of fancy punctuation, I turned this into “The Narcissus Prayer.”

The Narcissus Prayer

God, help those who help themselves
So they can take care of me.
When it comes to doing good,
I’m my own charity.
©Susan Bourrie 1985.

As I love what is left while living with low vision, I not only do not want to do away with words, I want to add notes and singing.  Thanks to the National Library Services for the Blind and Physically Handicapped, I am returning to my songwriting activities and taking them up a notch with two audio books that are available on BARD, Key to the Keys for the Visually Handicapped and Singing Success Library Series.

Monday, April 9, 2018

God Grant Me the Serenity to Adapt to Those Things I cannot Change


God Grant Me the Serenity to Adapt to the Things I Cannot Change

 I have lived for over 70 years with glaucoma and almost 30 years with cataracts.  For most of my life, I adhered to the Serenity Prayer and even made a needlepoint picture of it that was framed and hanging in my home for decades.  During the past year when my low vision went much lower, I destroyed that picture and rewrote my Serenity Prayer.  It says, "God grant me the serenity to adapt to the things I cannot change, courage to change those things I can, and the wisdom to know the difference."  I also have a backup for truly impossible situations that says, “God grant me the serenity to walk away from those things I cannot change, courage to keep right on walking, and the wisdom to never look back.”

Acceptance requires no effort on my part.  It is a passive lack of action.  Adapting, on the other hand, requires a lot from me including patience and discipline.  It takes both to get through the day when doctors say, "There is surgery for you now, but you have to get the rest of your body healthy first."  What made my body sick?  Mostly impatience, biting off more than I could chew, and choking on acceptance.

I am adapting to the reality that a 70 year old woman with a disability faces three categories of discrimination.  I am adapting to the reality that screen-readers used by the blind and visually impaired have never and will never be compatible with computers used for job searches and social media until software engineers and companies make that a priority.  I am adapting to living on Social Security in subsidized housing while spending many hours learning, Braille and how to be self-employed with the help of courses I am taking from the Hadley Institute for the Blind and Visually Impaired.

Adapting is not so bad when you are doing what you love.  I am writing again and self-published my children's book, The Misadventures of Mistletoe Mouse, by using Amazon Create Space.  I put the cart before the horse and now must learn about marketing and how to manage a writing business.  I also have to adapt to a new marketplace where books published by Amazon Create Space are not being sold in most independent bookstores or acknowledged for most Society of Children's Book Writers and Illustrators marketing activities as legitimately published.  I am adapting to this latest obstacle by returning to writing articles, poetry, and song lyrics rather than books until I am able to work with a literary agent.

While a 70 year old woman who is visually impaired faces obstacles when seeking employment, the opportunities for doing volunteer work is always an option where discrimination rarely exists.  Recently I have been appointed to advisory groups at both the Hadley Institute for the Blind and Visually Impaired (www.hadley.edu) and the Xavier Society for the Blind (www.xaviersocietyfortheblind.org).

No one ever said loving what is left while living with low vision would be easy, but with patience, discipline, and background music from an Amazon Echo, it can be a lot of fun and very exciting.  My favorite song these days is “Ukulele Anthem” by Amanda Palmer, author of The Art of Asking:  How I Learned to Stop Worrying and Let People Help