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‘Blind’ How Embracing This Word Led To Empowerment

'Blind' How Embracing This Word Led To Empowerment featured image description is in the body of the post.

‘Blind’ How Embracing This Word Led To Empowerment

I found I was living life feeling like a ‘broken sighted person’ when I could choose to live as a ‘whole blind person.’

~Liz Wisecarver, Woman On The Move
1 VW Bug
#1 VW Bug

I was born with cone-rod dystrophy, but growing up, I didn’t know I was “blind.” Professionals said I had too much vision to be blind, I was “low vision.” That meant I didn’t have to learn braille or use a cane.

My parents asked about braille lessons when I was about five, but professionals advised against it. They said I would try to look at the dots instead of feeling them. I remember thinking that sounded crazy since I couldn’t even see the dots on the page. But again, we were not the experts, so large print was the medium of choice.

I didn’t have a teacher of blind students or an IEP (Individualized Education Program); terms I didn’t learn until I was an adult. Ocassionally, I received orientation and mobility lessons (O&M) with a heavy marshmallow tip folding cane that came up to my armpit. But why would I need to use that in my tiny K-12 school a place I knew inside out? So the cane stayed folded up and out of sight.

The large print books were huge and heavy. Plus straining to read all day caused terrible headaches, so by high school, I almost completely stopped reading. Despite this, I graduated high school with OK grades and had a fairly normal adolescence.

2 Cannon
#2 Cannon

Finding Change In Between Two Worlds

In college, I felt something needed to change if I wanted to live an independent, fulfilling life. The problem was I wasn’t sure how to accomplish this change. My Vocational Rehabilitation Counselor (VRC) helped me get a CCTV (closed circuit TV) to read with on my desktop. And even though I didn’t use it, I at least carried my folding cane.

Since I couldn’t see in the dark I missed out on a lot of social activities. My fear was compounded because I was scared to travel to unfamiliar places by myself. I remember one evening in particular where I unexpectedly needed to stay on campus later than usual. This resulted in me not getting on the bus until twilight. When I arrived at my large apartment complex, I had trouble seeing the contrast of the buildings against the waning light. With only a  bit of light left in the sky I had to count the rooflines to find my building. There were several stressful incidences like that, and looking back, I’m surprised I didn’t get hurt.

But I wasn’t ‘blind,’ after all, I was ‘low vision.’ I felt like I was the only person in the world stuck somewhere between blind and sighted.

Thankfully, I eventually found out how to make a change. After graduating from college, I got a new VRC, Matt Lyles, who was blind himself. He said if I really wanted a challenge, I should check out the Louisiana Center for the Blind (LCB). He described it as boot camp for the blind, and he would know since he went there himself. Matt told me the most important thing he learned at LCB was that our limitations have more to do with our own personalities than blindness.

3 Tower
#3 Tower

Accepting A New Perspective About Blindness

Up until my conversation with Matt, that was the first time anyone talked to me about a residential blindness training program. I was ecstatic to start the nine-month training at LCB in 2010. The Center was different from the bit of blindness skills training I’d experienced before. Students with residual vision wear sleep shades during classes to focus on learning nonvisual skills like:

  • cane travel,
  • daily living,
  • braille,
  • technology,
  • and industrial arts.

Most instructors are blind themselves, and those who aren’t, often wear shades while teaching. Some of the most impactful moments for me were during trips:

  • white water rafting in Tennessee,
  • mountain climbing in Arkansas,
  • and in New Orleans at Mardi Gras.

LCB helped me develop a positive philosophy about blindness. Previously, I didn’t like to use the word ‘blind,’ I thought that was only for totally blind people or an insult. But I gradually learned I wasn’t fooling anyone by holding onto someone instead of using a cane. Or pretending to read along in print—I was blind, and that was ok. I found I was living life feeling like a ‘broken sighted person’ when I could choose to live as a ‘whole blind person.’

It was fascinating to me how many people experienced a similar lack of resources. After training, I earned my Master’s in O&M from Louisiana Tech University. I also hold a National Orientation and Mobility Certification
(https://www.nbpcb.org/nomc) to share the structured-discovery (http://www.pdrib.com/pages/canetravel.php) style of training with more blind people. Matt showed me the impact one blind person can make on another, and I hope to do likewise through my service.

4 Wedding
#4 Wedding

Paying Forward A Positive Philosophy

I’ve taught people of all ages cane travel and a positive philosophy about blindness through a variety of programs. Currently, I work for the National Federation of the Blind (NFB) of Texas as the NFB-NEWSLINE® Texas Coordinator. This position marries my undergraduate Journalism degree with my experience in the blindness field. NFB-NEWSLINE® is a free electronic newspaper and information service available to legally blind and print disabled subscribers. We also host training events for Texans of all ages across the state to teach people how to use NFB-NEWSLINE® and other blindness skills.

Outside of work, I am involved with the NFB of Texas CAREER Mentoring program for blind youth. My husband Trae and I live with two cats, and a weenie dog. I enjoy traveling, hanging out with friends, and shopping. Recently, I’ve gotten into paper crafting and became a Stampin’ Up! demonstrator. Art, like most anything, is something blind people can do with the right tools and techniques.

Not only would I have missed out on an amazing career and wonderful people without LCB, I would not have the tools and confidence I needed to be successful. I gained the skills to do small, everyday tasks like using a screen reader on a laptop and the confidence to understand that I am not inferior simply because of my blindness. I encourage everyone to find successful role models to serve as your mentors, and ask them what they did to develop the skills you appreciate in them. Blindness is not a tragedy, it’s just a characteristic.

5 Helen Keller
#5 Helen Keller

Connecting With Liz:

‘Blind’ How Embracing This Word Led To Empowerment Featured Image Description:

Liz smiles and is wearing a black scoop neck tee and sunglasses. Her shoulder-length chocolate brown hair is blowing in the wind, as she sails with the Sailing Angels Foundation based in Houston. The sky and sail are visible in the background.

Additional Image Descriptions:

  1. VW Bug: Liz poses with a brightly psychedelic floral-print painted Volkswagen Bug car inside her favorite boutique, Beehive Outlet in Ruston, Louisiana. She wears a mint green tunic top with white lace side panels and front pocket, white leggings, and a long gold and pink floral necklace.
  2. Cannon: Liz stands beside a Civil War cannon at the Tupelo National Battlefield wearing a salt-and-pepper wrap top over a black lace camisole, black skinny pants, and black flats. Her cane is decorated for Halloween with purple spiderweb Duct Tape.
  3. Tower: Liz stands atop the 85-foot-tall Wilder Brigade Monument tower at the Chickamauga Chattanooga National Military Park. She wears a short-sleeved teal floral-print kimono cardigan over a white t-shirt, the sky, and treetops visible in the background. Her cane is decorated with sparkling silver material and a blue satin bow tied beneath the handle.
  4. Wedding: Liz walks down the aisle at her friend’s outdoor wedding wearing a lavender V-neck ankle-length dress with lace accents, her brown hair styled in an up-doo with curls. Her long cane is decorated with the same lavender material as the dress.
  5. Helen Keller: Liz recreates the iconic well pump pose at the Helen Keller Birthplace & Home in Tuscumbia, Alabama. She stands smiling at the camera with one hand under the pump’s spout and the other pulling the lever. Liz wears a black sweater dress trimmed with blue and white stripes around the hem, black tights, and a long matching black and blue necklace.
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Blind Beauty #69 Kay Haines

Blind Beauty 69 Kay Haines Featured image description is in the body of the post.

Blind Beauty #69 Kay Haines

“I was diagnosed in 2014 with Stargardt’s disease, registered severely sight impaired (blind) within a month of diagnosis! Day-to-day is a struggle, I am a mother of 3, doing everything I can to help raise awareness of this disease.”

~Kay Haines

Kay Haines was recently featured as a Woman On The Move here at Bold Blind Beauty. Today’s post shared with her permission from Instagram is so relatable to me on several levels:

  • First, it was shared on February 28 which was Rare Disease Day
  • Second, her diagnosis came out of the blue
  • Third, before being diagnosed she’d never heard of her eye disease

While Kay and I have two entirely different rare eye conditions, we share some similarities. The major parallel Kay and I share is our mutual desire to build awareness of blindness. She went on to say:

“Before I was diagnosed I never heard of it, I was also never aware that you could be registered blind and still have some vision. I set up this page (Instagram: @me.myself_and_eyes) to help raise awareness for both the disease and what means to be blind! I hope by sharing my journey I can educate others but also be a support network for someone.”

Blind Beauty #69 Kay Haines Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. The closeup cover photo of Woman On The Move, Kay Haines is black & white. She has long dark hair framing the right side of her face. Blocks of text superimposed on Kay’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”

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Losing Sight Helped Me FindBalance Amidst Extremes

Losing Sight Helped Me Find Balance Amidst Extremes featured image description is in the body of the post

Losing Sight Helped Me FindBalance Amidst Extremes

I’d long forgotten what we were arguing about yet remembering the word he flung at me stung.
Things got heated between us early one morning as my brother was driving me to work in my vehicle. Since driving had become difficult because I was losing my eyesight, I had voluntarily given it up.

As you might imagine turning over the car keys was not an easy thing to do. In Trading Car Keys For A White Cane, I talk about what it was like having to do so. Anyway, being relegated to passenger status, then ending up in a screaming match, in your own vehicle? Well, that’s just all kinds of wrong. I can laugh about it now but in the heat of the moment, I was beyond furious. So angry in fact, while the tears stung my eyes I wouldn’t cry and I didn’t say another word.

‘Judgmental,’ he said. Me, judgmental? Seething with anger and the need for a private meltdown, I lunged out of the Jeep and rushed into my office building. A lobby, elevator bank, and 11 floors later I arrived at my destination. It wasn’t until I was safely in the ladies room where I allowed myself the luxury of crying. Of all the words in the world, why would he call me judgmental? More importantly, why was I so upset about it?

If it Looks, Swims or Quacks Like a Duck

If you’re at all familiar with the Myers Briggs Type Indicator you are aware of the 16 different personality types. I’m an INTJ short for Intuitive, Introverted, Thinking, and Judging. Yup, there it is, that word ‘judging.’ At the risk of being totally transparent, I’ve always known this was a personal character trait or flaw perhaps? Being in my head is an awfully lonely place to be because I tend to operate on many ridiculous assumptions. For example:

  • Chaos does not compute. Structure is my friend and I wrongly assume that others will abide by my standards.
  • Nonsensical madness like the ‘poke’ feature on Facebook. Can someone please explain what this is for? Or chain letters or worse yet chain messages. My assumptions in these cases are baffling because. Why?
  • Being on time is being 30 minutes early. ‘Nuff said.
  • Rules that make sense (refer to the second bullet) are designed to keep us safe and efficient. Rules that don’t make sense need restructuring (refer to the first bullet). So why in the name of heaven would anyone blatantly disregard the 20 items or less in the express lane? The assumption here? Yup, you guessed it― criminal.

So I may be a teensy weensy judgy but in my defense, I:

  • Create order in chaos
  • Whatever I do, I do it to the very best of my ability
  • Special projects allow me to joyfully tap into my workaholic persona
  • I’m really good at creating a plan, a backup plan, and a contingency plan for the backup plan

The Toilet Paper Roll Test

Which do you prefer over or under?

Through the years I’ve been told I’m intense, quirky, obsessive-compulsive, and opinionated. Just a mere few years ago for any given situation, in my mind, it was either black or white. There was never an in-between or gray area. And balance? Well, balance never really fit into the equation because some of my views were distorted.

To some degree, when I began losing sight I started seeing things more clearly. Learning that blindness isn’t black and white helped me to understand that many of life’s circumstances share a similar philosophy.

Today, I’m still quirky, intense, obsessive-compulsive, and judgy, it’s who I am, however, I’m also more open-minded. Blogging and social media have enabled me to meet so many people who have such compelling stories it’s opened my eyes.

Today, I’m more mindful than ever that while we are biologically the same, each of us is unique. Even though we may share similar situations how we react to them is personal and requires patience and understanding.

Today, I purposefully seek balance and am getting better at living in the moment. So how’d I do in the toilet paper roll test? Growing up in a strictly ‘under’ household when I would happen upon a roll that was ‘over’ I was done. I mean who does this? And why?

It wasn’t until one of my sons came to live with me for a minute that I was put to the test. Apparently, he rebelled against his upbringing and became an ‘over’ person. For a while we’d battle with the toilet paper roll, then one day I just gave up. And you know what? Nothing happened. There wasn’t a meteor strike, an attack of the body snatchers or zombie apocalypse and the best thing? The toilet paper still worked!

Today, I can proudly say I’m an ‘over’ person and proud of it! Releasing, released me and allowed me to experience a freedom like none other.

Losing Sight Helped Me Find Balance Amidst Extremes Feature Image Description:

The graphic is a simple black and white ekg with the outline of a ballerina in the center of the jagged lines.

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Holly Lynn Connor Changes Viewpoints

Holly Lynn Connor Changes Viewpoints Featured Image Description is in the body of the post

Holly Lynn Connor Changes Viewpoints

It’s takes a village to raise a child.
It takes a child with autism to raise the consciousness of the village.

~Elaine Hall

Holly Lynn Connor, the young lady you are about to meet today, is mesmerizing. To give you an idea of what I’m talking about check out this YouTube video of her singing. While I’ve been following Holly on Instagram for some time, it was only recently that I learned her story. I knew she was blind, I knew she had autism, and I also knew she was extremely talented. What I didn’t know was her backstory and how she came to be who she is today. Today, Holly’s Mom, Katie, invites Bold Blind Beauty readers into her beautiful daughter’s life. Enjoy! ~Stephanae

The Diagnosis

1 Holly Lynn Conner image description is in the body of the post.
1. Holly Lynn Connor

On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington with no complications. From day one, we noticed Holly never seemed to look at us and cried nonstop. We were assured by the pediatrician that her eyes were simply developing at a slower rate and not to worry. By four months Holly showed no improvement and was diagnosed with Septo Optic Dysplasia (“SOD”) and Panhypopituitarism (“Hypopit”).

A person with SOD has optic nerves that are small and poorly developed. Instead of having over 1 million nerve fibers from each eye to the brain, there are far fewer connections. Holly is rare in that she was affected in both eyes and could see little to nothing at birth. When Holly was diagnosed, there were minimal online resources and support groups. I felt alone in the world with no answers. To date, there are still no explanations as to what causes SOD.

Besides being blind, at an early age Holly displayed signs of autism (obsessive-compulsive behaviors, single words language, etc.). The combination of being blind and autistic really made for a difficult time, particularly the first 4 years. Until she was three-years-old, she:

  • wouldn’t walk outside,
  • eat solid foods,
  • go anywhere with fluorescent lighting,
  • sleep through the night,
  • wear shoes or any clothing below the knees or elbows.
  • And she cried pretty much nonstop.

Improvements Achieved Through Treatments

When she was four-years-old, we took her to China for seven weeks to receive stem cell treatments. The effect was miraculous. While the treatment was geared towards her vision, we saw a nearly 50% improvement in her autism almost immediately. Roughly two years later, her vision improvements also became apparent. Her vision increased from an inch or two to seeing contrast and movement up to 10 feet away.

Due to Holly’s successful treatment in China, we booked another round of stem cell treatment when she was twelve. This time it was to Panama. The trip to Panama was slightly more abbreviated at only 7 days. Since that visit, she has seen additional autism reductions. In addition, her vision, while still being blind, picks up contrast and movement up to 30 feet.

Two clear-cut examples of autism reduction are the reduction in Holly’s anxiety levels and the willingness to expand her diet. Pre-Panama her anxiety levels were nearly debilitating at times. As is common with most kids with autism, Holly would only eat about 5 things prior to Panama. Though she always objects at least once to a new food, now she eats nearly everything we give her.

Holly Playing Piano With Hands & Feet image description is in the body of the post.
2. Holly Playing Piano With Hands & Feet

Holly’s Musical Prowess

What makes Holly so unique and special is her musical talent, something we discovered at a very young age. When she was only a month old we played a Winnie The Pooh tape and she immediately stopped crying. After that, our house was filled with music 24 hours a day. It seemed to be the only thing that calmed her.

  • When Holly was 6 months old, she began playing the piano keys with her hands and her feet.
  • At age 1, she could count to 100, sing the alphabet backwards, and play simple notes on the piano. It was at this point where we realized she has instant memory.
  • By Age 2, Holly could play any song by ear on the piano.
  • At 3, we discovered she had perfect pitch, vibrato, and she could tell identify keys of songs on the radio.
  • When she was 4 we started piano lessons with a teacher specifically trained for kids with Autism.
  • By age 7, she could recognize and play complex chords on the piano. Holly also memorized and played songs on the piano after hearing them just once.
  • When she was 8, Holly picked up the harmonica and recorder. This was also around the time she started being ok in public. So we attended live theater and kids’ performances every weekend.
3. Standing at Piano image description is in the body of the post.
3. Standing at Piano

A Naturally Born Performer

Holly joined her first choir at her elementary school when she was 9 years old. She also began working with a vocal coach and attended her first vocal/piano classes. The facility worked specifically with kids with disabilities and paired them with typical kids. This year marked her first performance at a summer camp in which they highlighted her singing. The seed was planted for enrolling Holly in musical theater.

When Holly was 10, she had her first piano recital and first vocal competition. She sang opera and musical theater pieces and took 1st place for her age group. Shortly after, we moved to St. Louis for my husband’s job.

Holly started playing the cello in the school’s 5th-grade orchestra program and joined her first formal choir (STL Children’s Choirs). She also was in her first musical, Space Pirates. Being a new endeavor for everyone involved, she did her scenes sitting in a chair..

The following year, age 11, Holly started taking voice and musical theater classes. She was also cast in her second ever show, Seussical. This time she was doing limited choreography and even had a speaking line.

At age 12, Holly was cast in 8 consecutive shows with 3 named roles. The roles included Glinda in Wizard of Oz, Fairy Godmother in Cinderella, and Mama Ogre in Shrek. We also started her in ballet lessons.

Singing, Dancing & Acting

By the time Holly turned 13, it was an even busier year. She:

  • was cast in 10 consecutive shows with 4 named roles:
    • including Queen Victoria in a Little Princess,
    • Mrs. Darling in Peter Pan,
    • Bird Woman in Mary Poppins,
    • and Cinderella’s Mother in Into the Woods.
  • started taking tap lessons,
  • joined the school jazz band playing piano,
  • joined another choir, and
  • wrote her first original song.

That brings us to the present. At age 14, Holly is immersed in the arts 7 days a week when not in school. She is in 3 choirs, 2 jazz bands, acting and dance classes, private lessons for acting, ballet, tap, and piano.

Holly works out every morning on her spin bike. In addition, she also trains weekly with a personal trainer to help with low muscle tone. She is part of a tandem biking club half the year. At any given time she is in 2-3 musical theatre productions. Right now, she’s excited to be playing Medda Larkin in Newsies and Madame Aubert in Titanic.

Holly Continues Blossoming

The last few years of Holly’s development have been life-changing for Holly and for those around her. St. Louis musical theater community has been extremely accepting and inclusive. The directors have all been accommodating and understanding of both her visual and autistic needs. More than that though, the kids she performs with are more accepting than I could have ever imagined. They are always looking out for her and we never worry about her being in a safe space.

Now that she is fully immersed in the arts community in St. Louis and working with such a large number of kids, Holly seems to have friends everywhere she goes. For the first time ever, Holly found a best friend who’s become a huge part of her life. They talk every day, eat lunch together at school, and are in choirs and musicals together regularly. Her friend, Abby, has an effect on Holly which is hard to quantify. Through her friendship with Abby, Holly is learning more of what it means to be a typical teenager. She’s learning how to interact with others on a social level, and how to have empathy. Empathy is very difficult for someone with autism.

Being The Change

On January 1st, 2019 I began an Instagram awareness project, @365withhollyconnor, where I post Holly answering a daily question. Using the book, “Q&A a Day for Kids” by Betsy Franco, followers can learn about Holly’s life. They can also learn how she navigates the world being both blind and autistic.)

Recently, a girl from the local high school approached me. She told me that her twin brother has autism and Holly changed his life.  Peers began befriending him as a direct result of Holly’s involvement at school and her social media presence. Holly is showing it’s okay to:

  • talk to someone who is blind and autistic
  • be friends with someone who is blind and autistic
  • be unique and different

Holly is extraordinarily talented and we continuously keep her engaged with the world around her. Remaining involved in musical endeavors will position her for a greater opportunity for future success in life. Through the many ways she interacts with the world, Holly continues to influence and change how people see her. Hopefully, this will translate into how they see, interact with, and accept people with all abilities.

Holly Lynn Connor Changes Viewpoints Featured Image Description:

In the featured photo Holly is outside under a white event tent playing a baby grand piano. She is wearing a light print dress and her long hair is draped down her back. Her white cane is propped up in front of the piano.

Additional Image Descriptions:

  1. Professional headshot of Holly with long wavy red hair framing her pretty face. She is wearing an emerald green top.
  2. Black & white photo of Holly as a toddler sitting on a piano bench with her hands and feet on the piano keys.
  3. In this photo, little Holly is standing in front of the piano with her arms reaching up to play the keys. She is wearing a tan jumper paired with a white polo shirt and red (with white trim) Mary Jane shoes. Her blond hair is in pigtails.
  4. A photo grid with two photos. The first one is of a theatrical performance with Holly and a number of her peers in costume on stage. Holly and two characters on either side of her are wearing southern belle type gowns. In the second photo, Holly is singing solo holding a microphone. Outdoor photo of Holly casually dressed in a black jacket, jeans, and a white graphic tee. Her hair is pulled back and she has bangs and is also wearing sunglasses.
  5. This photo grid also contains two photos. In the first one, Holly and four friends are standing while posing for the camera. All five girls dressed for dance practice with black leotards and loose tops. Holly is in the center. The second photo is Holly with her best friend Abby. They are sitting on a pile of gym mats and Abby has her left arm around Holly’s shoulder.

Connecting With Holly: