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Featuring Christina Holtzclaw

Christina Holtzclaw featured image description is in the body of the post.

“Like most blind people, I found getting a job a struggle and even wondered if I had wasted my time.” ~Christina Holtzclaw

Christina Holtzclaw is a wife, mom, and Assistant Director at the Center for Independent Living. She has also shared other words of wisdom here on Bold Blind Beauty in Blind Beauty Issue #3 and Eyesight, Judgement & Independence.

The Early Years

Christina Holtzclaw closeup photo image description is in the body of the post.

Born almost blind, I learned to navigate the foothills of the Appalachian Mountains at an early age. Wading in the streams, hiking, fishing, and picking strawberries and honeysuckles has always been part of my life.

I was the first blind child to enter the public school system after the Rehabilitation Act passed. This act granted children with disabilities access to public schools. With very little assistive technology available at the time, I began Braille and typing when I was 6 years old.

Attending the blind school nearly 150 miles away from my family was a possibility if I couldn’t keep up with my sighted peers. I recall being told this before Christmas in my 1st-grade year. I vividly remember facing it with such innocence and naïvety. My focus was on Santa coming and bringing my new doll and in a month, I would turn seven years old.

I didn’t realize I was blind because I had always been treated the same as my sighted brother and sister. My school years were a rollercoaster of trial and error as the schools tried to create a space for me. I did not have other blind children in my life, so I learned about Country Singer Ronnie Milsap at our county fair when I was seven years old. He is my friend to this day and is credited with much of my success.

Beyond College

When I graduated high school, I won scholarships to attend a private college where I earned a Bachelor Of Science degree in Psychology. I also got my first guide dog named Chloe who lived with me in the dorms until I graduated.

Like most blind people, I found getting a job a struggle and even wondered if I had wasted my time. I finally took a job at a sheltered workshop for a while and later obtained a customer service job. During this time, I got married and had four children, 3 sons, and 1 daughter.

Being a blind mother has been an adventure. Often, people find it easy to want to interfere using blindness as an excuse although I’ve supported my family and have been a loving mother.

In 2004, I was contacted by the Center For Independent Living (CIL) to help open a new center. I was excited to build the center from the ground up and have been with CIL for 14 years now. 

As the assistant director, I love my job and being able to help others. I have learned so much from the people with disabilities that I have the honor of knowing. The position I’m blessed with has helped me grow, learn, and face my blindness as I help others.  

Thriving With Blindness

My vision took a turn for the worse in 2010 when I got glaucoma. The glaucoma pressure was uncontrolled and after surgeries and many medications, I lost my remaining eyesight in October of 2016. One of the most difficult things about losing my vision for me has been not seeing my family and friends. But, I have learned over the years, that I can still see them in different ways.  

I have my guide dog, Felicia, now and am constantly adjusting and trying new technology. My goal is to continue to assist people with disabilities on a local, state, and national level. I work with the Council and Federation of Georgia, the FCC panel, NCIL committees and serve on various transportation groups to promote access for people with disabilities. I always hope to pave a better way for those with disabilities who come behind me. The one thing I’m determined is to never allow blindness to stop me.

Christina Holtzclaw Image Descriptions:

In the featured image, Christina is posing in a wooded area with her right hand against a tree. She is holding her white cane in her left hand and wearing blue jeans with a black top. Sporting oversized sunglasses, she smiles for the camera while cloaked in a red, black and white flyaway jacket.

The photo included with the post, is a close up of Christina flashing her megawatt smile. Her blond falls over her left shoulder while her bangs frame her face. Christina is wearing a dark brown and tan-colored print top with a dark brown beaded necklace.

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Featuring Casandra Xavier

Casandra Xavier sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. In this photo, her dreadlocks are draped down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.

“I identify as deaf-blind and was born with blindness and deafness.” ~Casandra Xavier

Casandra Xavier stands in front of the Massachusetts State house side entrance with her long Iowa cane in right hand with her braille display slung at her right side. She has a tent of green and blue dreadloacks carefully turned into a Bantu-knot Mohawk. Her hearing aid matches the color of her hair. Her eyes are shaded with frameless sunglasses. She wears a crisp white button down shirt with a Swedish grey vest and deep grey slacks. In the background is the side entrance of the house of reps in Boston displaying an awesome ancient structure. She posed for state house news reporter.
Photo credit: Sam Doran from statehouse news

When Casandra Xavier crossed my radar on January 3, I wanted to learn more about her. I saw her in a Blind New World article and needed to share her Woman on the Move story. A quick Google search took me to her amazing address to the Massachusetts legislature video. To see advocacy in action, check out Casandra’s video at the end of the post. You won’t regret it! 

My name is Casandra and I go by the ghostwriter name, “CaspHer.” I am originally from Miami, FL but I grew up in Boston, Massachusetts.

I identify as deaf-blind and was born with blindness and deafness. The conditions I have are both separate and just happen to be with me simultaneously from birth. Those conditions are Anophthalmos and Microtia Atresia.

During my academic career, I did not attend Perkins School for the Blind even though I lived one town over. I also live near the Carroll Center for the Blind and was never introduced to either establishment until I was twenty-four.

Currently, at twenty-eight years old I lived twenty-three years of my life trying to pass as sighted and hearing. I hadn’t begun to learn American Sign Language (ASL) until I was almost twenty-six. Since then I’ve developed enough skill to establish a comfortable working experience with an ASL interpreter.

A Course Redirect Changes Casandra’s Life

I studied visual arts and English literature in college. My plan was to remain in the art world since art was all I knew from a very early age. Looking beyond my world of writing fiction stories, digital photography, and tactile art was no-go. That is until I attended the Carroll Center for the Blind in Newton, Massachusetts.

While attending the Carroll Center, I realized I could potentially become a great instructor for the blind or deaf-blind. I learned Braille with ease and quickly absorbed my other blindness courses. I wanted to learn more blindness related practices.

After training at the Carroll Center, I attended Blind Inc. in Minnesota to fine-tune my blindness skills. This helped to reassure me that I would be okay. On completing my Blind Inc. training I learned I was not your typical blind person. I was indeed a proud deaf-blind woman straight out of the depths of Massachusetts!

During training in Minnesota, I lost more hearing! Most people would have fled the scene but I’m not most people. I’m Casandra. I dug my heels in further and rode it out until the wheels fell off with extreme but minor modifications to my training.

Satisfied with what I accomplished in Minnesota and teaching at a center for the blind; I flew back to Massachusetts and dove hands-first into ASL class at Perkins (2015-16). During my first ASL class, I excelled and was ready for the next level. I outdid myself at all other levels as well! I used a pro-tactile ASL interpreter to access information in an extremely visual class. Deaf-blind students use pro-tactile ASL interpreters to gather classroom information. The pro-tactile ASL interpreters use a technique to sign into the students’ hands.

The Student Becomes The Teacher

As I submerged myself into the deaf and hard of hearing (HOH) community, I was presented an opportunity to become an assistive technology trainer. For the longest time, I was totally stunned that something so great would happen to me.

I worked diligently with my students and ensured everyone learned something. While doing all of these awesome things, I was still working on my signing skills which were coming along very well.  I felt it was totally fine to feel proud of myself since I worked and struggled so hard to get where I was at the time.

Though I missed out on learning deaf-blind skills when I was young, I have become an advocate for the disabled and the LGBTQ community. In the past year, I filed some legislation on disability awareness training starting in Massachusetts with intentions of it becoming federal law.

While there are many pieces of similar legislation, mine will stand out because people within the disability community can observe and offer constructive commentary. This will ensure a positive experience for everyone.

I enjoyed the wonderful opportunity working with the Massachusetts State House while bringing this legislation to life. During this encounter last summer, I got to see the inner working of the House of Representatives.

At college, I learned a technique called, “application of knowledge” and I’ve carried it with me until today. I have decided that I would take all of what I’ve learned from the Massachusetts State House and apply it to my work as an advocate in the community. Not only did I use this method while advocating, I’ve also used it as an assistive technology trainer for the blind and deaf-blind as well.

Freedom Of Being Heard

Letting my voice be heard after many years of being left in the dark and forgotten was the best and most encouraging experience ever. The power of exposing my strength was far too good to let go of, so I held onto that exposure and gave myself the title, “Disability Advocate.” I feel I have earned this title and it’s exactly how I want to be recognized. In the past few months, I have been invited to speak at schools in Boston and online podcasts to talk about my story and what I am doing. For a majority of my presentations around the city, I will use an interpreter.

These days, I am still an assistive technology trainer in Massachusetts and still learning additional ASL skills. I am very involved with advocating for and with the constituents of Boston.

Whether I am presenting or not, I always enjoy wearing a fedora hat with or without a necktie from Men’s Wearhouse and crisp white button down. A lot of my friends tell me I look like I am about to perform a music video whenever I dress up. Speaking of music, I enjoy shredding on the electric guitar and occasional karaoke sessions. I’ll be honest, outside of the extreme seriousness, I enjoy going out to gay clubs and having a blast with the drag queens and some friends in downtown Minneapolis.

I hope you enjoyed this trip down story lane.

Thank you.

Casandra Xavier’s Featured Photo Description: 

Casandra sits at a table with a microphone at Perkins School for the Blind, was in the middle of asking a question. She wears polarized aviators. In the background are two people glancing attentively at her while she asks her question. Casandra’s dreadlocks drape down her back with a heavy, natural brownish-red color. Around her neck is a phone loop for her hearing aids, she wears a crisp white button-down shirt with her braille display strap exposed. She was fully aware of Perkins photographer.

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Featuring Lynne Nicholson

Lynne Nicholson's image description is in the body of the post. The quote on the image is

“Looking back over my life I realise my challenges have strengthened me even when they overwhelmed me.” ~Lynne Nicholson

Lynne Nicholson, like many of the women, featured here on Bold Blind Beauty made a few comments, followed the blog, and we developed a friendship. Even though myopia or nearsightedness is very common I’ve not met too many people who share this diagnosis and who’ve also lost eyesight. While Lynne and I are fellow myopes we lost our eyesight to two different conditions tied to our myopia.

I learned self-reliance; to trust in my decisions and to know none were final. Finances meant becoming inventive. Sometimes mired in depression, I felt there was no way up and out….. but there was always HOPE.

At one low point during a church discussion on mansions in heaven I whispered to a friend “I’d happily take fewer life challenges and a leaky tent”. I’ve been myopic from childhood – the world in soft focus without specs was normality. June 2016 my optician saw an anomaly. My hospital appointment was for almost four months later. My new specs didn’t improve my vision, a continual soft focus was my new normal.

An Answer In The Form Of A Diagnosis

My immune system already attacked my platelets and at the end of September 2016, I was diagnosed with Punctate Inner Choroidopathy (PIC) also immunity related—injections could slow down sightloss—but eye doctor wanted to check with blood doctor that blood medication wouldn’t be an issue for the treatment, an appointment would follow—urgency wasn’t implied. However, my current blood doctor left that day and it was two months before I saw the new one. Christmas was coming and it wasn’t until the January I chased up the eye appointment as my eyes definitely seemed to be worse. Two phone calls two weeks apart resulted in an emergency appointment (4 months after diagnosis) in which I learn my left eye is beyond treatment. Five weeks later I registered as sight impaired (9 months after anomaly seen).

I struggled to wait for the official help entitled to me nine months exactly after diagnosis I met my ROVI (rehabilitation officer vision impairment). By this time I’d worked out the “in-home” stuff (cooking, lighting, using my smartphone camera to see my surroundings). However, I lacked confidence when out and about since my “dognav” (my pet dog, Tippy) crossed the rainbow bridge. If I got disoriented I panicked without her. I only went out when necessary.

Restoration Of Independence

Then Wanda Power came into my life. She is my wand of power (white cane) with her I have regained my confidence and much of my independence.

I was finally registered Severely Sight Impaired (Blind) 13 months after diagnosis.

Of course, there are times I need help after all my clearest vision is four inches in front of my nose. At arm’s length, the blur is such I cannot recognise my daughter if we meet on the street. If I’m going shopping (clothes, household goods or main food shop) I appreciate the help. If I only have a few items to get (to tide me over to the next major shop) Wanda and I go to my local shops. The hardest thing I find is crossing roads but I learn routes that take me to the safest spots to cross even if it means I am not taking the most direct route.

What I have learned (for myself) through my life experiences is:

  • Going blind doesn’t make my top ten worst things in my life.
  • Life can knock me down but I always get back up.
  • If I really want to do something I’ll find a way.
  • Asking for help isn’t a weakness”

Everything from Looking back over my life to asking for help isn’t a weakness is my submission.

Lynne Nicholson’s Featured Image Description:

Selfie of Lynne Nicholson. She is wearing a red and black tartan type check top. In her own words, she is “looking pretty serious as if the camera is at the right distance for a selfie I can’t see if I’m clicking the button.”

The photo is in boldblindbeauty.com’s WOTM template. Three-quarters of the template contains the photo and in the bottom portion is Lynne’s quote in teal text.

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Featuring Rose-Ann Lyons

What am I Doing Now? How is my Life? It takes Courage!!

After losing my Peripheral Vision in a Boating Accident on July 1st, 2008, it has been a long journey. Nine years later, this is “NoW” What I am doing?

I am learning to Curl! I have joined the Kelowna Curling Team for the Blind and I am being Coached by Dan Martel at the Kelowna Curling Rink. I am providing pictures of what my Coach has created in me with one month of coaching in February; then the season ended, and of coaching that started up on October 8th; the season beginning. I have a whole truckload of thank yous’ to my Coach. He has helped me and inspired me; resulting in me developing a “NeW” passion: Curling! I love to throw the Rocks! I love the ride!   

I have previously provided an Article as a Guest for Bold Blind Beauty.  With this subsequent Article, I am elaborating on What am I Doing “NoW”?

It began when I was approached at Christmas, 2016, and was asked to attend at the Kelowna Curling Rink to Curl with the Curling Team for the Blind. It was February 2017, and I had not yet attended at the Curling Rink. What was stopping me? What was I afraid of? I got upset with myself. I decided that I was going to the Curling Rink. It was the 1st Sunday in February 2017, my Guide Dog in Harness, my husband driving and I was heading to the Kelowna Curling Rink. I had been informed that the practice started at 10:00 a.m.on Sundays. It was 10:45 a.m.; Sunday morning, I’m late! but I was on my way.  

I was tempted to ask my husband all along the way to turn around; take me home. Entering the parking lot, I was still thinking about turning around; take me home. “THeN” the truck stopped at the doors. I inhaled a deep breath! I got out! I “NoW” knew there was no turning back! I walked in and was approached and welcomed by such warm, kind, people. I relaxed! No more panic! The “fun,” the “joy,” the “excitement” began!! When I arrived, I was asked what I wanted to do. I have never curled before so I said I was there to learn to Curl with the Curling Team for the Blind. There was one month left before the Curling season was ending. I began learning to Curl! Coach Dan Martell gave me lessons and with his coaching skills and inspiration, I developed a new passion. “Curling!”

It was a huge step for me to take A N D I am now part of something that gives me great “joy.” New team! New friends! An outing in the winter months! I love the game! I am starting in a Ladies League; with one percent vision, in the second week of November; that being twice a week. I love it so much that I will Curl in the Ladies’ League and continue to Curl with the Team for the Blind. Love the game!! Love to Curl!!

 

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Featuring Megan Darcy

A 5K Blindy Moment

Photo of Megan looking very happy with herself immediately after aforementioned fabulous 5km. She is smiling for the camera wearing a black ball cap and tank in multiple shades of blue.
Here is Megan looking very happy immediately after her fabulous 5K

It may have cost me a pajama day on the lounge, and some serious toddler treat negotiations with Little (Emily) so I’d have to actually parent. But the cognitive overload and exhaustion was oh so worth it.

Guess who challenged her bad arse self to a solo park run with nothing but a sketchy mental map, a trail cane, a buzzy thing, and a Running Rope on her hip in case she made a friend along the way? Oh God but no sunglasses. Why oh why didn’t I retrieve them from the kitchen bench?

Okay, so technically I wasn’t alone, as my sister and husband were on the course, along with a gaggle of walkers, runners, and volunteers. Which was probably just as well given how inaccurate the construct of my narrative was regarding the route. I had only done the course once before early in the year.

I spent much of my run having no idea where I was, confused about what I didn’t know, relying on the shadowy shapes of the world, whispering of the wind, the footsteps of others, and faith in my madness and mobility skills to guide my path, which meant that passing the blue shirt in front was a risk, because what if I missed the next turn? Which of course I totally did on almost every occasion.

So thank you to all who provided directions when I inevitably needed them. Every stride was fraught with dilemma, and was a fight against evolution. What if I fell? What if I went the wrong way? What if I ran into someone?

But just keep going, because I was having too much fun. My cane in one hand bounced awkwardly in front of me, hampering my form. While the buzzy thing which vibrates when it detects obstacles within a particular range proved useless. I wanted to ditch them both, because they were slowing me down, but how would people know to give me a little more room, or more understanding.

The Charles Bonnet* hallucinations didn’t kick in until about 1500 m, and that is when things got interesting. But still I kept putting one foot in front of the other, and wondered why it felt so hard and heavy, when in my head i see myself as moving with grace, lightness, fluidity, and sweet, sweet synergistic freedom.

Should I stop? Nah because that would suck!

Breathe in, breathe out… Surely the turnaround point is somewhere.

I don’t remember this part. This is more complicated than I thought. Everything looks the same. Where am I? Bla bla bla.

I was pulled from the white noise of my mind when my trusty cane failed at the 3500m mark. I was just considering whether to fold it up and run without it, or… umm… actually there was no or. I mean how hard could it possibly be right? Sure I had no idea where the finishing line was, or in fact where I was in relation to my ambition. But I had this. And this was awesome!

And that is when it happened. That is when I finally made a friend. That is when Charles stopped to ask if I needed any help, and if we could run together. And the rest is beautiful history.

An avid runner, Megan is also a wife, mom, fashionista, and author of Blind Mama. If that weren’t enough, when Meg puts on her entrepreneurial hat, she runs Taylored Thinking, maker of creative fashionable accessories and athletic gear for people who are blind or visually impaired. 

*Charles Bonnet Syndrome (CBS) is a common condition among people who’ve lost their sight. It causes people who’ve lost a lot of vision to see things that aren’t really there – medically known as having a hallucination.

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Featuring Virginia Maze

It’s Not a Curse

Recent picture of Virginia Maze sitting in a car smiling for the camera wearing Aviator sunglasses.
Recent picture of Virginia Maze

Losing one’s sight is no walk in the park and I think it’s safe to say that no one would argue against that. In fact, many sighted people probably would consider it a curse. I know the younger me certainly thought so.

When I was 13, I was diagnosed with Usher Syndrome. This diagnosis explained my congenital moderate to severe hearing loss, something that was no big deal to me. In fact, I have embraced my deafness as a beautiful gift. A blessing. I enjoy being a part of two unique worlds: the deaf and hearing. I also love being able to turn off my hearing aids to shut out annoying sounds, like the roar of a vacuum, or when I just need some peace and quiet. But the diagnosis also revealed something else. Something that was looming on the horizon: I was slowly going blind.

Blind? How? Why? I could not see any good coming from my impending gradual sight loss. No, this was a curse.

Virginia is straddling the equator in Uganda. She is standing with arms outstretched in an upright circle that has "Equator" in bold lettering at the top of the circle.
Virginia straddling the equator in Uganda.

My vision has now progressed to the point where I am deemed legally blind due to no peripheral vision. And though it has been a difficult adjusting to my ever-changing sight, I no longer view it as a curse. I certainly still experience feelings of disheartenment, anxiety, and a desire for restoration, but through it all, I have been blessed with opportunities and friends that I would have missed out on if I did not have Usher Syndrome. Opportunities like advocating on Capitol Hill on behalf of deafblind individuals nationwide, standing in the Oval Office to meet one of the presidents of the United States, straddling the equator while in attendance at the World Federation of the Deafblind conference in Uganda, and of course the many friends I’ve met all along the way. I can confidently say that I have lived a fulfilled and satisfying life and I plan to continue to live a joy-filled life even when and if my vision completely fades away.

Photo of Virginia at a strawberry picking farm. She is standing in a field of strawberries holding a bucket of the fruit.
Virginia at a strawberry picking farm.

Blindness does not have to be a curse. No struggle or trial has to be viewed as a curse. In fact, it will only a curse if you make it one. The trials we face are real, but it’s important to take a step back and find the blessings among them. They are there, even if they are small.

 

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Featuring Taylor Papadopoulos

My name is Taylor Hosea-Papadopoulos and I am twenty-eight years old. A little under two years ago I was diagnosed with posterior uveitis; this condition is similar to wet macular degeneration.

Posterior uveitis causes inflammation in the back of the eye near the macula; the inflammation causes choroidal neovascularization which ultimately causes vision loss. I have a small amount of vision loss in my right eye due to neovascularization causing scar tissue near my macula. Even though facing posterior uveitis is daunting I remain hopeful that with science, a positive attitude and faith that a cure will be found for myself and for many others living with vision threatening conditions/vision loss.


The initial blow of finding out that I had a sight threatening condition was completely devastating and I found myself in total fear of the future. After finding support through my family, husband, friends and various people who I had met that were experiencing similar struggles I realized that life was not over, it was just beginning.

Although dealing with the loss of vision in my right eye has been less than easy I have not let this hold me back from anything. I have realized that when we are put in certain situations we are stronger than we ever imagined possible.

In any bad experience in life the best thing to do is to try and make the best of it in any way possible and that is what I have done with my eye condition. ~Taylor

Since I was diagnosed two years ago I have gotten married, graduated with my Associate’s Degree and have now moved on to work on my Bachelor’s Degree, seen 9 different countries in Europe, made the Dean’s List every semester in school, worked full-time, been a full-time wife, friend, daughter and sister among other things.

I have really used what is going on with my vision as motivation and drive to be the best version of myself that I can possibly be and to accomplish every goal that I have set my mind on. ~Taylor

My appreciation and zest for life has grown immensely and I wake each morning with relentless gratitude.

In two years, I hope to be graduating from Cal State Dominguez Hills and applying to grad school so that I can obtain my LCSW (Licensed Clinical Social Worker) and begin my career. I cannot wait to be in a field where I will be able to truly help people who are in need.

In a world that has become so hateful, I want to be able to spread love and compassion through sharing my experiences with others. If you are going through a hard time whether it be vision loss or something completely unrelated keep putting one foot in front of the other and I promise it will get easier; positive thoughts breed positive outcomes.

You can follow Taylor on Instagram at @mrspapadopoulos.

 

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Featuring Maria Johnson

I Got This!

A smiling Maria is showing off her "good hair day" for the camera wearing a black and white v-neck top
Maria Johnson

Each person’s walk through the loss of eyesight is different. Today’s Woman On The Move, Maria Johnson, of Girl Gone Blind, is a powerhouse who you get to personally meet by way of her podcast interview with Thomas Reid of Reid My Mind Radio.

I recently spoke with Maria by phone and was immediately taken with her energy and how much we share in common. We are in the same age bracket, we are parents, and we are passionate about our missions.

“I realized I needed to get my head wrapped around this whole “I’m now blind” thing!” ~Maria Johnson

Maria, who suddenly lost her eyesight to Leber’s Hereditary Optic Neuropathy (LHON) a condition that can cause the optic nerve to atrophy, began to publicly share her journey three months after sight loss. Three and a half years later she’s attained a huge following and is featured weekly on RNIB Connect Radio.

When you have a moment take a listen to the podcast and visit Maria over at Girl Gone Blind. Additionally, you can connect with Maria on social media at:

 

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Featuring Jo Elizabeth Pinto

“The Bright Side of Darkness”

Jo Pinto Receives the 2016 Colorado Independent Publishers Association Award. She is seen here posing for the camera holding her award in both hands with her white cane under her right arm. Jo is looking very stylish in a blue, black & white abstract floral print dress and black boots.
Jo Pinto Receives the 2016 Colorado Independent Publishers Association Award

My name is Jo Elizabeth Pinto. I was born three months too early in 1971 and lost my eyesight to retinopathy of prematurity. I grew up on braille and Talking Books from the National Library Service. Like many blind children, I spent my childhood waiting eagerly for bulky black boxes and square plastic cases to arrive in the mail, holding braille books and 4-track cassettes that brought me familiar voices such as Mitzi Friedlander and Roy Avers. I devoured all the great writers children should discover—Dr. Seuss and Roald Dahl, Hans Christian Anderson and Laura Ingalls Wilder, Beverly Cleary and Judy Blume, John Steinbeck and William Shakespeare.

Jo with her yellow Labrador guide dog Anlyn walking on leaf strewn tree-lined sidewalk with gold, red and orange autumn trees.
Jo with her guide dog Anlyn a yellow Labrador

And I knew I wanted to be an author. From the time I figured out words could be written down in books and enjoyed, again and again, I knew someday I would write. When I was in elementary school, supposedly doing math assignments or studying spelling words, I’d often be busy at my Perkins brailler, pounding out poetry or creating title pages and back cover descriptions for books I dreamed of one-day publishing.

My novel, “The Bright Side of Darkness”, began as a short story assignment for a high school English class. I got an A on the assignment and fell in love with the characters who came to life in my imagination.

Bright Side of Darkness book cover illustrated as a corner room that has a bar covered window and light shining through. There is a silhouette of a person seated with their arms on their knees and head in their hands. In the upper left corner of the book is a bright red bow.
Bright Side of Darkness book cover

I never forgot those characters. In my twenties, in order to learn how to use a word processor, I dragged out that old short story and typed it into my first computer—a DOS machine with 5-inch floppy disks and no Internet. The writing needed a lot of work, but the characters still captivated me. I added to the story, changed and deleted weak parts and moved paragraphs and chapters around. I picked the project up and put it down many times over the next twenty-some years as life happened. I took advice and editing from countless people. I went to writing workshops and joined critique groups to hone my craft, and I never gave up on my dream. In June of 2015, I finally published my book.

Second photo of Jo with Anlyn walking on the leaf strewn tree-lined sidewalk with gold, red and orange autumn trees.
Jo Pinto and Anlyn

As I’ve marketed my novel over the last two years, I’ve had the opportunity to meet many wonderful people, blind and sighted, and to be drawn out of my comfort zone. I’m a natural introvert and a recluse at heart. But introversion and reclusiveness are diametrically opposed to book marketing, so I’ve had my limits stretched in exciting ways as “The Bright Side of Darkness” finds its place in the world.

The novel won two First Place 2016 Next Generation Independent Book Awards, one for First Novel Over 80,000 Words, and one for Inspirational Fiction. It also won several 2016 awards from the Colorado Independent Publishers Association: First Place for Inspirational Fiction, Second Place for Audiobook Production, and First Place for Literary and Contemporary Fiction.

Besides writing, I work from home as a braille proofreader and hang out with my family, which includes my nine-year-old daughter and her dad, and my guide dog Anlyn.

Author links:

Image Descriptions:

  1. Jo Pinto Receives the 2016 Colorado Independent Publishers Association Award. She is seen here posing for the camera holding her award in both hands with her white cane under her right arm. Jo is looking very stylish in a blue, black & white abstract floral print dress and black boots.
  2. Jo with her yellow Labrador guide dog Anlyn walking on a leaf-strewn tree-lined sidewalk with gold, red and orange autumn trees.
  3. “Bright Side of Darkness” book cover illustrated as a corner room that has a bar covered window and light shining through. There is a silhouette of a person seated with their arms on their knees and head in their hands. In the upper left corner of the book is a bright red bow.
  4. Second photo of Jo and Anlyn walking on the sidewalk in autumn.
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Featuring Silvia Seyringer

Stanley & The Staircase To The Light

Silvia (white cane in hand) and her daughter (wearing Mickey Mouse ears) are posed standing in Disneyland.I am a survivor. I tell myself this every day, so it must be true! When I found out I was losing my sight, I was devastated, but although it was a harrowing and speedy process, it was not the worst thing that had happened in my life. Having gone through worse and survived, I knew I possessed the key to letting myself out of this dungeon and I knew the staircase to take to see the light again (pardon the pun!)

The first sign I was losing my eyesight was a rare cataract condition resulting from damage inflicted on my eyes as a child. After operations and exploration of the nerves, it was discovered that I had an additional, rarer condition: juvenile macular degeneration, rods and cones dystrophy. Instead of viewing the world through rose-colored glasses, I view the world through a blue lens, with black polka dot spots! (I still see through rose-colored glasses metaphorically, though.)

It was extremely hard for an independent person like me to adapt to the seeming lack of freedom when sight had deteriorated such that I was provided a white cane by Vision Australia. I absolutely detested asking for help. My daughter helped as much as her busy life allowed, guiding me on her arm whilst I used the cane (Stanley) to navigate uneven ground surfaces. Why Stanley? Because I couldn’t stand ‘him’ but essentially, he led me around, plus a reference to black and white era comedians, Laurel & Hardy (Stan being the extremely skinny one!) A very wise woman had recommended naming your cane. It makes it more personal and like a member of your family, whom you need to accept.

We had planned a trip to Disneyland because my daughter missed out on another trip, so this was to be our time together. Little did we know that by the time we left Sydney, I would not be able to see beyond 10cm from my face. Working our way through those throngs of bodies, everyone out to get to where they were going as fast as possible, is a story in itself. I was so grateful that I had a solid body to hold on to and that Stanley announced that I could not see ahead of me. It made it so much easier for others to accept that I had not walked into them deliberately or bumped them with intent. When people are rushing (especially in huge crowds), there sometimes isn’t even the time to apologise properly, so a glance at a cane alleviates this courtesy.

Needless to say, my favorite ride was Space Mountain (which is set entirely in the dark). I could really enjoy that one as I could relate! The non-vision impaired screamed in terror, I just screamed because the sensations of going through space without seeing what was ahead of me was so eerily familiar! And because I was strapped in, I felt safe and it was fun when compared to the unpredictability of day-to-day travel.

Having lost the use of my sense of sight to a large extent meant that I really had to use my brain. I am beyond thankful that my memory still functioned and I could work out where to go using logic when I couldn’t see. I learned to really listen for train station names and sounds after missing my (extremely well-known) stop so many times because I couldn’t recognise it anymore. Trying to ask for directions (or even just to find out where you were) was problematic in a city of 5 million people; no one has patience or time for you, however, at one glimpse of the cane, people were immediately more forgiving and accommodating.

I realised I had to stop working when I didn’t see clear glass and broke many beakers in my laboratory at work. There was a bit of an existential crisis when I realised I couldn’t work as a scientist – “Am I still a scientist?” I need to transition to theoretical science rather than conducting practical experiments. Or retrain altogether, in a different field.

Every day is a challenge but as time goes by, it becomes the norm as you get used your new way of being. And it is not so bad, as many unexpectedly good things have come from being differently-sighted. I now regard it as a blessing. I have gained so much more in terms of valuing life and experiences. At the conclusion of each day, I give thanks that I was privileged to experience it, no matter that the shape and look of these days is different to all those previous years.

Image: Silvia (white cane in hand) and her daughter (wearing Mickey Mouse ears) are posed standing in Disneyland.

I met Silvia on Instagram and was immediately captivated with her photography. Not only does she take breathtaking photos but her descriptions are sublime. You can connect with her via @silviasalzburg to enjoy her craft.

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Featuring Ashley Nemeth

Close up photo of Ashley looking fabulous.

I will not let my vision dictate what I can do in my life, and I certainly will not sit back and let life pass me by. I want to show the world what I am capable of despite my disability. ~Ashley Nemeth

Confidence, strength, independent and loving life. These are the traits that I had always wanted to have when I was younger. The problem was that I was not able to have these things when I was hiding the fact that I had vision loss. It is hard to be confident, strong and independent when you can not even admit to yourself that you can’t see the world around you, the way you should be able to.

Ashley and her guide dog, Rick are posed with her snowboard. There comes a point in your life when you just need to be happy and want to live your life to the fullest. For me, this came in the form of my worst nightmare. I lost the remaining sight that I had, very quickly. I was living in a sighted world and getting by as a sighted person even though the world was not clear through my eyes, but now that I had seen nothing except for light and dark there was no more hiding anything.

My world became dark and I really had to fight to get my life back. This was a hard journey, I had to really work to get to where I wanted to be. I am so happy in my life as it is right now, even in the dark. My life was turned upside down but it was the best thing that could have happened to me. I am now living the life I have always wanted.

I am confident, strong, and independent. I am able to live the life that I want because I took the time to work on me and make me a priority no matter what anyone else thought. Through that work I found that being an advocate was where I should be focusing my time, not trying to be sighted when we all know I never really passed because well…… I couldn’t damn well see haha! Acting is not my forte.

Now that I am able to live my life my way and love every minute I am able to help others to realize that, life as a blind person is not a death sentence. It does not mean that your life is over and will suck from that point on. The complete opposite, in fact, you can live a full amazing life…. you just have to want it.

Ashley has been featured on Bold Blind Beauty several times where I’ve shared some of her wisdom in the form of quotes. She is a fierce and tireless advocate who seizes life by knocking down barriers and spreading her message of equity like a champion fighter.

You can connect with Ashley on the following social media platforms:

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A Few Words On Why Good Health Is Critical For Diabetics

Nicole is wearing her shield to protect the eye after the vitrectomy. Second pic is of her wearing the shield and paper glasses after she had one of many follow-ups with the surgeon and was dilated.
Nicole wore a protective shield after her vitrectomy.

“Going blind had always been one of my worst fears as I knew it was a possibility with having type one. I want you to know that you can have diabetes and not end up like me but you have to maintain your blood sugars.” ~Nicole

I recently featured Nicole on www.boldblindbeauty.com in recognition of National American Diabetes Association Alert Day to bring awareness to the issue of Type 2 Diabetes. Nicole, who has Type 1 Diabetes found out first hand just how devastating this disease can be on the body. Among other issues that she deals with on a daily basis over the past couple of years, she’s been fighting to save her eyesight.

Thankfully Nicole got a reprieve in the form of good news as her left eye is now stabilized. While this is an excellent report, her battle continues. If you or anyone you know has diabetes it is critical that you take good care of your body to hopefully avoid significant diabetes health related issues.

#typeone #diabetes #diabetic #t1d #omnipod #dexcom #retinopathy #eyedisease