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Blind Author’s Diversity, Inclusion & Anti-Bullying Novel

Image is described in the body of the post.

Introduction

Advocacy is in my blood and fuels my spirit. So when my friend Donna Hill sent me an email asking for help to win a book cover competition I said YES! Since I’m always looking for opportunities to increase accessibility, inclusion, and representation this opportunity is a fun way to do this. Please join me in voting for Donna’s book cover HERE. Together let’s change how we perceive one another. Without further ado, it’s my pleasure to present Donna:

Now in Final Round of Book Cover Competition: Vote it into the Winners’ Circle!

By Donna W. Hill

Earlier this month, my educator-recommended, young adult novel, The Heart of Applebutter Hill, was chosen to compete in AllAuthor’s Cover of the Month Competition. I remember the first time I visited my special page and hearing JAWS, (Job Access With Speech) my screen reader, say “0 Votes Button.” It seemed like a hopeless case – not that I haven’t been there before.

I entered, and Jaws said, “1 Vote Button.” Since that first day, I’ve been working my butt off, following every lead and using social media in ways I would have never dreamed of only a month ago. Through blog posts, status updates, newsletters, emails to individuals, posts to my many Facebook and LinkedIn groups and requests to authors on the AllAuthor site, I’ve been doing everything I can to get the vote out.

Some of the procedures are complicated, but I’m doing them so much that it’s like my hands are dancing around the keyboard. I’m happy to announce that The Heart of Applebutter Hill is now in the fourth and final round! I’m using the opportunity to raise awareness about blindness, guide dogs and accessibility, & I would appreciate your help. If I’ve already convinced you, just go vote: https://allauthor.com/cover-of-the-month/5725/

Description of the Book Cover of The Heart of Applebutter Hill

Book cover for The Heart of Applebutter Hill by Donna W. Hill shows a cave scene - stalactites reflected in an underground lake, while a hand holds the Heartstone of Arden-Goth: photos, Rich Hill;, design, Lizza Studios.
Book Cover

The cover of The Heart of Applebutter Hill shows a cave scene – stalactites reflected in an underground lake. In the bottom right, a hand holds the blue, heart-shaped Heartstone of Arden-Goth. Photos by Rich Hill; cover design by Bob Lizza, Lizza Studios.

The idea for the book cover, however, came from yours truly. I have a beautiful blue glass, heart-shaped paperweight, which was given to me by my “secret sister” when I belonged to a women’s circle at St. Paul’s Lutheran Church in Glenside, Pennsylvania. The cave scene is a bit of a secret. I would like to find out if anyone recognizes it. I will say that my hubby Rich and I have been there twice, and without seeing it in the ordinary sense of the term, that cave formation dug a hole right into my imagination and provided one of the novel’s most exciting, scary and intriguing scenes.

Some Thoughts on the Big Picture

Pink breast-cancer-awareness afghan, designed and knit by Donna W. Hill,  features twining vine surrounded by butterflies and candle flames: photo by Rich Hill
Breast Cancer Awareness Afghan

Pink breast-cancer-awareness afghan, designed and knit by Donna W. Hill, features twining vine surrounded by butterflies and candle flames with “Buddy Check” in Braille: photo by Rich Hill.

Why is this so important to me? It’s October which makes it “Breast Cancer Awareness Month,” and a celebration for me of twenty-nine years as a breast cancer survivor. I am aware that life is short and that there is a reason each of us is here, a unique perspective on the human condition we hold in our hearts and share as a gift to Life.

It’s also “Meet the Blind Month.” I was born legally blind from Retinitis Pigmentosa, a degenerative condition, and I feel an obligation to smooth the trail a bit for the next generation. People with vision loss are still dealing with the devastating impact of misguided, erroneous and cruel prejudices and low expectations about our potentials. These prejudices are held by people who have limited imaginations when it comes to their own impressions of what it must be like to not have eyesight.

Sighted Folks Need Our Help

The sighted world needs to learn about and embrace us for at least two reasons. First, many of us have developed survival, coping and innovation skills that are far less common in the general public. We know how to press on. We don’t have the luxury of giving up after a few tries. We endure humiliation and find ways of coping with it.

It was the news about how average Americans were reacting to the Great Recession that enlightened me. So many people have no clue how to deal with adversity. They’re devastated after applying for and not getting ten jobs. They are thunder-struck when their “friends” don’t want anything to do with them after they’ve lost their homes or jobs. The socioeconomic structure in which they place their trust is a mirage, and when they finally figure that out, they don’t know how to continue. It’s sad.

Secondly, there are people out there, from children to senior citizens, who are unknowingly living as temporarily sighted people. Most of the people in the world who are now blind lost their sight as adults. They grew up as sighted kids, soaking up the negative stereotypes about blindness, until they found themselves having to give up on life or transform their thinking about what it means to be blind. Too many give up.

Social Change Through Literature

Blooming Amarilis with a print copy of The Heart of Applebutter Hill by Donna W. Hill, a fantasy adventure featuring some awesome flowers: photo by Rich Hill.
Blooming red Amaryllis with book

Blooming red Amaryllis with a print copy of The Heart of Applebutter Hill, a fantasy featuring some awesome flowers: photo by Rich Hill.

Blind people come from every race, religion, ethnic, social, age and economic group. From genius to developmentally challenged, straight to gay, we are a cross-section of humanity. To open the minds of the next generation, we need to get our young adult novels & autobiographies into the classroom, where books can open young minds about the abilities and common humanity of visually impaired people.

I have been working on this issue all my adult life, using music, classroom visits, school assemblies and now literature. The prejudices – yeah, there’s that word again – are deeply entrenched in the human mindset. Whether due to unfamiliarity or something else, these roots need some serious tugging at to break free.

Yes, we can open minds about blindness through literature. A book can give sighted people a safe place to get to know a blind person. It’s also important that young blind people get to see themselves in an exciting adventure fantasy. I believe it can help bridge the gap between the sighted public and the blind community and help kids who are losing their sight realize they are not alone.

Blind Authors & the Publishing Industry: a Locked Door

The publishing industry, while occasionally willing to take on the nonfiction stories of blind people who make it into the public arena, has been more reluctant to embrace fictional portrayals of blind people by blind authors. The disability community has a saying, “Nothing about us without us.” So far, however, the industry is more open to fictional portrayals of blind people by sighted authors.

Some blind writers have been told that their portrayals of blind girls and women are “unrealistic.” Others were told that the public wants their fictional blind females to be demure, spiritual and in need of rescue. Despite the obstacles, more excellent blind authors than ever are establishing themselves as career authors.

Blind Authors Find Ways Around Those Locked Doors

Whether through self-publishing or by working with small publishing houses, their work is getting out there. Some of my favorite blind women authors include Deborah Kent Stein, Amy Krout-Horn, Kristen Witucki, Meredith Burton, Phyllis Campbell, Jo Elizabeth Pinto, Patty Fletcher, and Lynda Lambert. As for blind men, there’s Jerry Whittle and Justin Oldham for starters.

Fiction by blind authors, however, is not on the bestseller’s lists. Several years ago, I ran across a report by the diversity watchdog group “Diversity in YA.” They track the Publishers Weekly bestsellers for young adult novels with main characters and authors with minority status, including disabilities. In 2013, there were no blind main characters. There were also no black main characters. Only the gay community even came close to having a percentage of books in line with population.

This is evidence of the rejection of diversity by the publishing industry and in my opinion something we need to change to create an atmosphere of inclusion in the general population. Here’s a link to the report: http://www.diversityinya.com/2014/03/diversity-in-publishers-weeklys-2013-young-adult-bestsellers/#more-3170

Voting Instructions for Jaws Users

Go on over to: https://allauthor.com/cover-of-the-month/5725/

  1. The page title is “Vote for The Heart of Applebutter Hill
  2. From the top of the page, use ‘h to next heading which is the book title The Heart of Applebutter Hill.
  3. Down-arrow past author & genre till you hear a number followed by “Vote button.” At this writing, I have 258 votes, so it should say, “258 Sign-in Vote Button.”
  4. Enter.
  5. You will be prompted to sign up to the site; choose ‘author or ‘reader. You can establish a nice profile, but you don’t have to.
  6. Give your email, password and sign up. Thanks, bunches, you’ve just voted.

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When Passion Is Palpable One Must Pursue It

“The one thing you have that nobody else has is you. Your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can. The moment that you feel that just possibly you are walking down the street naked…that’s the moment you may be starting to get it right.”

~Neil Gaiman

Advocacy can occur on many levels from creating a massive movement to a simple blog but it all begins with a passion for positive social change. When I was asked to participate in an upcoming event to bring awareness to the abilities of people with disabilities I couldn’t say no. 

Disability InSIGHTS is a seminar designed to increase awareness of the abilities of people living with disabilities. I will be one of 7 speakers who will share stories of triumphs, obstacles, and breaking down barriers. More on this in a moment.

Typically when we hear stories of people who are on the front lines of social justice the conversation revolves around passion. There is something that ignites the fire within us to create positive change. While it’s true passion has a defining role in our advocacy efforts we seldom talk about another major player—fear.

Working Through Fear

Fear is universal and yet many times when we talk about success fear isn’t a major topic of conversation. I’ve lived a life of fear and a life of overcoming. Losing my eyesight was one of my greatest fears that I never thought I’d be able to accept. However, it was my fear of blindness that in part prompted me to create Bold Blind Beauty. 

Fear was the reason why I declined an all-expense-paid trip to Kansas earlier this year. Even though the opportunity to empower blind & visually impaired youth was seductive I just couldn’t let go of my fear.

The thought of traveling out of state on what would be my first solo flight after my sight loss terrified me. Questions swirled around in my head like:

  • would I know where to go once I was dropped off curbside at the airport?
  • what if the assistance I requested ahead of time wasn’t available?
  • would I have a panic attack because everything I see is indistinguishable?
  • what if I had to use the restroom, would I get lost?
  • would the flight attendants show me to my seat?
  • since my trip connected through another airport what would that be like?
  • what would I do if I encountered problems because people doubted my disability?
  • how would I handle the prospect of being stranded?

With all these questions and more, you’d think I’d be satisfied with declining the trip but I wasn’t. Truth be told I was still unsettled yet I couldn’t articulate why. Thankfully, I was given another chance, this time I said YES! and I went to Kansas.

The Cumulative Effect

The Kansas trip was only the beginning of all the wonderful things to come this year as a result of my work at Bold Blind Beauty. While I’ve been blogging for nearly 5 years I cannot tell you the number of times I’ve questioned myself as to whether this is a fruitful effort. Then last year I partnered with advocate extraordinaire, Chelsea Nguyen, and together we founded CAPTIVATING! Magazine, a free, accessible online lifestyle magazine. CAPTIVATING! provides monthly content about culture and style for people of all abilities proving that inclusion is limitless.

As a result of my partnership with Chelsea, and my work with Bold Blind Beauty I’ve enjoyed these amazing experiences:

Next, in the lineup of this year’s events are:

My trips to Kansas and Utah were sublime. CAPTIVATING!’s award from the Texas Rehabilitation Association was a delightful and totally unexpected surprise. Then filming the behind the scenes story of Bold Blind Beauty last week was extraordinary. 

I’m eagerly anticipating the Disability InSIGHTS Seminar where I can share my tips on the path to social entrepreneurship. This event is being held in recognition of International Blindness Awareness Month and National Employment Disability Awareness Month. It will take place on October, 18 from 11 am – 3 pm at the Tom Ridge Environmental Center in Erie, PA. 

Seeing The Beauty In People

I believe everyone has value. I also believe our perceptions of people can get in the way of our ability to appreciate their value. For far too long we’ve looked at people who are ‘different’ from ourselves and immediately leap to conclusions without knowing their story, without knowing them. When we add disabilities (visible and invisible) to this equation we become ‘experts’ in determining their worth and it isn’t fair nor is it right. 

We all have moments of insecurity, uncertainty, and fear. I nearly let my fear keep me from life-changing events where I’ve learned so many valuable lessons. None of this means I won’t ever feel uncomfortable or downright scared. However, when I ask myself why inclusion, accessibility, and representation are so important my passion will continue to help me push through my fear.

Courage is contagious and when we share our vulnerabilities it empowers others. How about you? Can you think of a time that fear nearly prevented you from meaningful achievement? 

Disability InSIGHTS Information:

Featured Image Description:

A closeup view of a blank wooden arrow sign against a bright blue sky dotted with a few puffy white clouds.

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Why We Need AIR: Accessibility Inclusion Representation

Image is described in the body of the post.

Air is vital to sustaining all life. For people with disabilities, AIR is equally important to our survival. In this scenario AIR, symbolizes Accessibility, Inclusion, and Representation 3 key elements required to break down barriers.

Why We Need AIR: Accessibility Inclusion Representation

Capitol Crawl

Accessibility, Inclusion, and Representation matters. As a person of color, over 50, female, and living with an acquired disability, I know how exclusion feels. Exclusion is one of the reasons social justice has always been important to me.

When you’re born into several marginalized groups there’s a certain amount of uncomfortable familiarity where discrimination and exclusion is concerned. There is a whole other level of discrimination when becoming a member of the disability community that makes day-to-day living a bit more uncertain. Well-meaning friends and family try their best to understand our experience and we try to help them by inviting them into our world. Living with a disability is a uniquely personalized experience for every. single. person. None of us, even those who share the exact same disability will live with it in the exact same way.

Many people aren’t aware that the disability community is the largest minority group in the United States. What makes our minority group different from others is anyone, at any time can become a member. Our community doesn’t care about your social status, education, sexual orientation, age, etc. ANYONE can acquire a disability during their lifespan. As we get older the likelihood of acquiring a disability increases significantly.

While we’ve made strides towards increasing accessibility, inclusion, and representation we still have a long way to go. The fight for equal rights in housing, education, employment, transportation, and more continues as we still face many barriers.

The Fight For Disability Rights

On July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law.

PBS did a moving documentary in 2011 on the Disability Rights Movement called “Lives Worth Living.” The first time I saw it I felt sadness, anger, and the need to act. People with disabilities share many of the characteristics of our non-disabled counterparts, we simply do things a little differently.

“The “Capitol Crawl” protest for disability rights on March 12, 1990, might have been the single most important catalyst for the passage of the Americans with Disabilities Act (ADA) 25 29 years ago. The law aimed to end segregation of physically and mentally disabled persons and promised them equal opportunity to participate in society, live independently and achieve economic self-sufficiency.

See Capitol Crawl Image Description

In my blog post, “Observing 25 Years of the ADA” I found this bit which I’ve edited: Our lack of understanding, fear, and inhumanity towards people with disabilities I believe, promotes continuing injustices. It’s no wonder when a life-altering event occurs and we acquire a disability, we have a difficult time adjusting. Coming face to face with our prejudices, then navigating a still-flawed system to protect our new status, can be a difficult transition.  

Sadly, some of us take the stance that disability rights are ‘not our problem,’ that is until we are disabled. However, being ‘temporarily abled’ as the majority of us are, makes it our problem.

Air is free yet there are some who believe not everyone is deserving of AIR. Disabled lives are human lives and all human lives matter.

We’ve come a long way since the ADA became law however the fight for Accessibility, Inclusion, and Representation continues.

Featured Image Description:

Striking black and white photo of a silver skeleton key in mid-air aimed at a keyhole.

Capitol Crawl Image:

A group of handicapped people led by 8-year-old Jennifer Keelan, left, crawl up the steps of the U.S. Capitol in Washington, March 12, 1990, to draw support for a key bill now pending in the House that would extend civil rights to disabled persons. The group of about 1,000 people or rode in wheelchairs down Pennsylvania Avenue from the White House to the Capitol. (AP Photo/Jeff Markowitz)

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Carla The Exuberant Chief Communications Officer

Carla The Exuberant Chief Communications Officer

Hello, I’m Carla Ernst’s publisher and I’m contacting you because I know she was involved with Bold Blind Beauty. I’m very sorry to tell you that she passed away a couple of days ago.

Image of Carla and her white cane is described in the post.
Carla With Her White Cane

I’d just come home from visiting my friend who was recently diagnosed with cancer. The stress is palpable as I’m working on getting the June edition of CAPTIVATING! issued. I heard the email notification on my cell. Figuring it was one of our CAPTIVATING! team members, I glance at it and the next thing I know I’m screaming.

When anyone calls the Bold Blind Beauty 800 line it automatically sends a transcript of the voicemail. I thought this has to be a mistake when reading the transcript. So I open the email on my 32-inch monitor, then read and re-read the message. Comprehension slowly creeps up on me as my heart is breaking—Carla is gone!

Gosh, just writing this brings it all back—the tears, sorrow, and devastation of losing someone so close to me. While it’s been two weeks since she died a very large part of me still can’t believe she’s gone.

Exhuberant & Extraordinary Carla

I met Carla on November 10, 2016, right here on Bold Blind Beauty. It all began with a comment she left on one of my blog posts:

You look fab Steph! (I’m trusting my sighted girlfriend Ann who told me so). I lost my vision several months ago, but I have not let that negatively impact my sense of fashion one bit. I wear a lot of pencil skirts too, but I’m thinking of upgrading to pen skirts. Way more permanent. These pencil skirts could erase. Which would not be good because they have a no-nudity policy here in Milwaukee.

~ Carla Ernst

How was I to know that this one comment would lead to such an extraordinary friendship? The funny thing is, Carla and I never met in person. Yet this comment was the beginning of something very special. The comment led to an email which in turn led to a phone call that completely changed my life.

It’s so interesting how meaningful relationships can evolve while living in the virtual 24/7 world. My friendship with Carla was such a relationship. From the very beginning, her corny sense of humor was contagious; I remember telling her she should become a standup comedian. In addition to being a person who could make you laugh non-stop, Carla was extremely intelligent and uber professional.

Writer Extraordinaire

My relationship with Carla was life-changing because she clearly understood my passion for advocacy. Because of this understanding, she offered to help me to improve Bold Blind Beauty.

In a matter of months, we consolidated messaging and websites. If you’ve been following Bold Blind Beauty for a while you’ll remember there was a separate online store. The standalone online store was named after Abby our fashion icon. Then there were individual social media platforms for each site which made things a little hairy.

Carla’s offer to create a concise message made me feel a little; no, I was actually extremely uncomfortable. Living on disability means finances are tight and I knew I couldn’t afford her services. Here’s the kicker though: when I told her I couldn’t pay her she said all she wanted to do was to help. Who does this in this day and age?

Carla wasted no time developing a strategy She:

  • wrote Abby’s story and rewrote my bios (I now have several from which to choose)
  • hosted two focus groups to gather data to learn more about our audience
  • advised me to create a Steering Committee
  • updated the site’s structure to make more sense
  • helped me consolidate the obsolete Abigale Style into Bold Blind Beauty
  • contributed tons of content to Bold Blind Beauty
  • represented Bold Blind Beauty as Chief Communications Officer
  • presented endless ideas the most recent was giving Abby a voice

As a communications guru, Carla’s passion for writing could only be matched by her advocacy. She had a heart for volunteerism and gave so much of her time and talents to organizations who help improve the lives of others. What’s ironic about me writing this piece is I feel like I cannot do her justice.

What Carla Taught Me

Acceptance has to be one of the most important takeaways from my friendship with Carla. Remember how I said I met her in 2016? It wasn’t until last year that I learned something about Carla that hurt me to the core. Her memoir, Life Without Pockets: My Long Journey Into Womanhood, was a subtle hint.

I read Carla’s book in one sitting. It was excellent. As soon as I finished reading it I called her. While I can’t remember our exact conversation what I do remember is how badly I felt for her. To be clear, learning that Carla was trans was not an issue for me. Instead, I was hurt that she thought if I knew it would turn me against her.

Carla and I would talk on many subjects the majority of which focused on preconceived notions of others. Blindness was a great starting point, I think because of the many metaphors on the topic. For example, when you can’t see how a person looks it doesn’t matter— it’s about character.

However, in Carla’s defense, I get it. Being a member of several marginalized groups myself I understand how much it hurts when people cannot accept you for who you are. The beauty of Carla was that she didn’t place conditions on her friendships. She was 100 percent the real deal and I’m so beyond honored to have known her and call her my friend.

Moving Forward

I talked to Carla two days before she passed away and we had such a great conversation. She wasn’t feeling well; hadn’t been for that entire weekend but she wanted to share some ideas with me.

Being who she was, Carla was also a CAPTIVATING! team member and had big ideas on how we could further impact the world. We talked by phone at least twice a month and no matter what was going on in her life, Carla was positive.

I’ve always believed the majority of the world is full of very good, well-intentioned people. People like Carla reaffirms my belief, yet it would be reckless of me not to acknowledge the hatred. Hatred is the reason why Carla was hesitant to tell me her story and no one should ever feel this way. We are all human and we all struggle. For those who cannot feel empathy for others, you’re the ones missing out. Nobody knows what’s in store for each of us but I’ll tell you what it’s far easier being kind and compassionate than filled with hate.

Everyone has biases but until we get to know one another, I don’t understand how we can feel dislike towards another. Carla, I will forever be grateful to you for bringing so much light into my life. You are a bright star and I will miss you terribly my friend. I love you. RIP

It takes a minute to find a special person, an hour to appreciate them, and a day to love them, but it takes an entire lifetime to forget them.

~Unknown

Featured Image Description:

A headshot of Carla with auburn hair and she’s wearing a black top.

  • The second image is a black and white full body shot of Carla posing with her white cane. She is wearing a floral dress with floral patterned hose.