Tag: Retinitis Pigmentosa

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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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Blind Beauty 75 | Nivi Morales

Blind Beauty 75 | Nivi Morales Featured Image Description is in the body of the post.

“I believe people who are visually impaired have an enormous amount of creativity, we have skillful ways of navigating through the obstacles daily life brings. I hope my story encourages people to find their own ways of expressing themselves. Whichever way they find best fits: art, sports, travel, you name it..! Just go for it!”

~Nivi Morales

Blind Beauty 75 | Nivi Morales’ Story

Photo Credit: Maria Luz Salas

For as long as I can remember I have been fascinated by small details. Over the years I have used my camera to express this fascination. This is something relatively straight forward for me to explore because my eyes naturally frame things in their own particular way.

In 2002 I was told I had lost a significant percentage of my peripheral vision due to an eye condition called Retinitis Pigmentosa. Doctors told me I would gradually lose most of my peripheral vision, that there was no cure. For someone who had been relatively healthy, this diagnosis came as a shock. However, I decided not to give up. A year after the diagnosis I started traveling. It did not take long until I discovered a new hobby: photography.

Finding New Meaning

In the last four years, this hobby has really taken a new meaning as my sight continued to change. I started using a white cane and some adaptations to read small print. The new challenges did nothing but fuel my thirst to explore and express myself, to lead a productive happy life. I have continued to capture details of nature, landscape, and buildings in my local area and on my travels.

Every day I make a conscious choice to focus on the positive details. There is nothing more rewarding than capturing a moment and then looking at it through the help of my computer. The sense of joy and fulfillment I get from developing and sharing images gives me the energy to carry on, even in challenging times.

I believe people who are visually impaired have an enormous amount of creativity, we have skillful ways of navigating through the obstacles daily life brings. I hope my story encourages people to find their own ways of expressing themselves. Whichever way they find best fits: art, sports, travel, you name it..! Just go for it!

I want to finish by thanking Stephanae for the opportunity to share my story with you all stunning Bold Blind Beauties out there.

Connecting With Nivi:

Blind Beauty 75 | Nivi Morales’ Story Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Nivi Morales’ image on the cover is black & white. Blocks of text superimposed on Nivi’s photo are: “Bold–She Keeps Pressing Onward, Blind–She Has Deeper Insight, Beautiful–She Sees To The Heart Of Others.” “Real Beauty Transcends Barriers.” “Makeup Trends for 2019–How To Maintain A Flawless Look.”

Additional Images:

  1. This color close-up photo of Nivi’s featured image on the faux fashion cover was taken by her mother. It’s an outdoor shot and in the background, greenery can be seen. Her salt & pepper hair is in a stylish short cut and she is wearing fashionable squarish wired rimmed eyeglasses with pink lip color. She is also in a navy v-neck top.
  2. This image is from Nivi’s recent trip to Italy. It’s a photo of a swan swimming in Lake Garda.
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Blind CrossFit Athlete Is Empowered & Unstoppable

Blind CrossFit Athlete Featured Image Description is in the body of the post.

Today’s Woman On The Move, Kimberley (Kym) Dekeyrel, was recently featured as a cover model on the March edition of CAPTIVATING! An edited version of the following article also appeared in the magazine however we have some exciting news to share! It’s amazing what this woman has achieved in two years after a major lifestyle change.

Blind CrossFit Athlete Is Empowered & Unstoppable

I want to show visually impaired people they can do anything. At the same time I’m showing my children there are no excuses not to be your best. At 37 I am the blindest I’ve ever been, yet I feel more unstoppable now than ever.

~Kym Dekeyrel, Woman On The Move
#1 - Kym, her husband and two sons photo description is in the body of the post.
#1 – Kym, her husband & 2 sons

My story of vision loss began before I can even remember. My parents received my diagnosis of retinitis pigmentosa (RP) when I was five years old. I can only imagine their devastation when they were told their bright blue-eyed daughter would most likely be totally blind by the age of 18.

Without hesitation, they began to prepare me for life and I started learning braille and taking mobility lessons weekly. I learned cane travel and carried around ridiculously large print books all throughout school. Yes, I was made fun of. No, it wasn’t easy being the kid with the weird orange glasses that couldn’t go out for P.E. But my parents placed me in dance lessons and it became everything to me. I was a natural performer and never felt like the blind kid when I was in the spotlight.

Even though I was the poster child for RP, I was an anomaly to doctors. My vision loss didn’t progress like typical retinitis pigmentosa. I lost my central vision first and was left with scattered islands of peripheral vision. Because of this, I honestly never felt like I was understood by other visually impaired people. I wasn’t in denial of being blind, but when you mourn the loss of your vision your entire life it simply becomes a part of your day-to-day challenges.

Life’s Detour After Devastating Diagnosis

#2 - Kym and her husband photo is described in the post.
#2 – Kym and her husband

So my life carried on. I went to college and earned my degree in dance and kinesiology. After graduation, I went to massage school then later met my husband at my first job at a doctor’s office. It was about this time that life punched me in the gut with a diagnosis of lupus symptomatic of rheumatoid arthritis. The agony I suffered for three years made being blind seem like a walk in the park.

By this time, I had one son named Cooper and knew I couldn’t live a life worth living if I could barely move. After doing research my husband put me on an extremely strict diet that saved my life. Within six months of changing my diet, I was back on a treadmill and ready to have our second son, Easton.

I never returned to dancing but two years ago my husband brought me into a CrossFit gym, I was terrified. How could I do anything if I could not see anything? But by the end of my first class, I knew I had found my new passion.

Now, I am trying to become an empowered representation of the visually impaired in the adaptive CrossFit world. I want to show visually impaired people they can do anything. At the same time I’m showing my children there are no excuses not to be your best. At 37 I am the blindest I’ve ever been, yet I feel more unstoppable now than ever in my life. Being blind is hard, but if you live by faith and not by sight anything is possible.

CrossFit Games

CrossFit photo of Kym is described in the body of the post.
Kym doing her thing

@KymPossibleXoXo as she’s known on Instagram, found out last week that she qualified for the adaptive CrossFit games in July. Her Instagram exploded when @CrossFitGames shared one of her competition videos and get this, it’s been seen over 350K times!

I can’t tell you how excited I was to receive a message from Kym with her news. She even said that while we “technically” haven’t met, she was so excited to share this with me. And of course, I was probably just as excited to hear it directly from her.

The adaptive CrossFit games are held north of Toronto and Canada during the country‘s largest Functional Fitness/CrossFit Festival of the year. Over 1,000 athletes of all levels will participate but Kym is the first blind athlete to be invited as a part of the adaptive athlete division.

As having a visually impaired athlete in the competition for the first time, Kym is nervous and excited to educate the adaptive CrossFit community on how to best adapt movements for blind athletes. We are excited to stand by her all the way! We encourage anybody who would like to support or sponsor Kym through her journey to contact her. You can reach Kym directly via email at kymdekeyrel@gmail.com.

Like her Instagram alias, Kym is showing us that anything is possible.

Blind CrossFit Athlete Featured Image Description:

In the featured photo, Kym is doing what she loves, working out in the gym. She is squatting while holding 90-pound barbells straight over her head. Her workout ensemble is a black tank top with gray and black leggings with geometric shapes and pink sneakers. Kym’s long blonde hair is in a ponytail.

Additional Image Descriptions:

  1. Kym, her husband and two sons, Cooper and Easton, are posing together as a family. Mom, wearing a black dress, and dad, in a blue polo shirt, is standing behind the boys.
  2. Kym and her hubby are standing together looking sharp. Date night perhaps? Kym is wearing a sleeveless plum colored dress with taupe dress shoes and her husband is in a suit. He is holding his jacket over his right arm.
  3. In this photo, Kym is in mid-shot of tossing a big ball against the wall at the gym. She’s in the same outfit as in the featured image.
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RP Diagnosis Develops the WHY & Leads to Entrepreneurship

RP Diagnosis Develops the "Why" featured image description is in the body of the post.

RP Diagnosis Develops the “Why” & Leads to Entrepreneurship

“I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark.” 

~Hannah Steininger

RP (Retinitis Pigmentosa) was the diagnosis. I got into the car at the eye clinic and sat in silence with the devastating news I’d just received. It was a cold, blustery October day in 2008. I even remember how cloudy it was as the trees stood bare. We were parked directly in front of the window of the clinic. My eyes were fixed ahead on people sitting in the waiting room.

“Am I going to go blind?” I asked my mom after what felt like hours.

I felt my face get hot, as the tears welled up in my eyes. Dumbfounded, confused, and scared, I didn’t know what to think. You can never go back once you find out something like that. Immediately I felt so different. Everything started to make sense:

  • how cautious I was at night,
  • why I had always wanted to sleep with the hall light on,
  • why I hated movie theaters.

The list goes on and on. I was glad that it was all making sense, but at the same time, I wished I hadn’t found out.

Up until age 15, I thought everyone saw the way I did. Why think anything else? I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark. 

For about 8 years I decided nothing was wrong with me. I ignored the diagnosis of RP and I refused to take my pills regularly or tell anyone about my vision.

College Changed Things

Once I got to college, I would get into risky situations. Scenarios, like going out and drinking with my friends or walking home in dark, were commonplace. I fell and injured myself too many times to count. Crying
because I couldn’t see on the dance floor like everyone else, I’d leave, alone and in the dark. Why couldn’t I be like everyone else dancing so lighthearted. Going out became so taxing and so painful that I isolated myself my senior year of college.

After I graduated college and moved back to Minneapolis something in me shifted. I was sick and tired of feeling sorry and bad for myself. So much hope I had placed in research and retina specialists. When they told me there was nothing I could do and that my vision was getting worse, I was crushed. I began looking up alternative ways to help heal vision loss. That’s when I found micro-acupuncture.

For the past two years, I have been taking a more holistic approach in the way I manage my RP. I began eating a diet of anti-inflammatory foods, educating myself about how the systems in the body work together, and started going to micro-acupuncture.

As I have been opening up to others about my vision and started to advocate for the modifications I need, I noticed a lack of awareness about vision loss and people who struggle with it. So many people are affected by loss of vision at some point in their lives, why is it not more well-known and talked about in society?

The “Why” Turns Into Entrepreneurship

One year ago, I quit my corporate job and decided to pursue my passion. On February 16th, 2019, I launched Watson & Wilma, a line of ethically made intimates. I designed each piece and enlisted the help of local pattern makers to bring it to life. Each item is made-to-order and sewn in Minneapolis from 70% sustainable and organic fabrics.

  • Bamboo Bra
  • Models

Vision loss is an invisible disability but a major part of everyday, as intimates are a similarly hidden but important part of every outfit. A portion of each sale will be donated to the Penny George Foundation, to help provide holistic care and treatments to those with vision loss. My mission is to spread awareness about vision loss and for the visually impaired community. 

As expected, there are still hard days and days that I become discouraged about my vision, but my “why” keeps me going. I am doing my best to turn my pain into empowerment and allowing it to navigate my path instead of fear.

RP Diagnosis Develops the “Why” Featured Image Description:

A scenic outdoor shot of Hannah smiling while standing outside with a mountain range in the background. She is dressed casually in jeans, striped top, with hiking boots and a long warm-looking sweater. Hannah also has a black knitted hat on her head and her long brunette hair is draped over her outfit.

Additional Images:

  • Bamboo Bra: A black bra called Pick Me Up Around 8
  • Models: Two women (one brunette, one blonde) are wearing all of the pieces in Hannah’s current collection. The photo shows them hanging out in a living room. One of the models is sitting on a sofa while the other one is kneeling on the floor looking through music albums.

Connecting With Hannah: