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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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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.

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:

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Kay Haines | Me Myself and Eyes

Kay Haines Featured Image description is in the body of the post.

Kay Haines | Me Myself and Eyes

Kay Haines Guide Dog Training image description is in the body of the post.
Guide Dog Training

In August 2014, I was driving through some country lanes when I almost hit a tree that was in the middle of the road. I just didn’t see it until the last minute and luckily, managed to avoid hitting it. After this incident, I knew I needed to have my eyes tested again. While previous eye examinations indicated that my eyesight was fine, for some time I felt I couldn’t see things clearly.

With the expectation of being told I’d need to wear glasses full time, I got my eyes examined at Specsavers. Instead, the optician showed me an image of my eye and pointed to black areas at the back of my eye. I was scared at this point as I didn’t understand exactly what he was showing me.

He explained that from what he could see I had a disease called Stargardt’s. Coincidentally, his mother also had this disease. I asked him if glasses would help me to see properly, however, he said they wouldn’t help with my vision. He told me I needed to be referred to Moorfields Eye Hospital in London to receive an official diagnosis. I asked him outright if I was going to go blind; my heart sank when he said yes, I would! He told me that I would have to stop driving immediately.

Diagnosis Confirmation

I can’t even describe what I felt when I was told that I was going to lose my sight. My emotions were everywhere, I rang my mum and husband, I couldn’t stop crying! They thought I misunderstood but I told them to look up Stargardt’s disease online.

Over the next few days, I don’t think I stopped crying but I couldn’t just sit there any longer. Needing to know what I was facing, we contacted Moorfields and asked for a private consultation. I was seen by the doctor and it was confirmed that I had Stargardt’s disease. He couldn’t tell me much more until I underwent more tests to know what stage it was at.

I went through all the necessary tests over the next few weeks and within that time my sight deteriorated further. By September 2014, I was registered severely sight impaired (blind). My sight was measured at 6/60 in both eyes meaning I was 6 times over the legal driving limit. I was in total disbelief about how much my whole life had changed within such a short space of time. As a mother of two, one of whom was autistic, and I felt terrified for our future.

Since we were living in army quarters in Surrey at the time of my diagnosis, we decided to relocate. We would move back home to Wales to have the support from our family and friends.

Moving On

By December I started cane training. This difficult to accept as it made my loss of vision seem so much more real. It felt that everyone else would also be aware of my struggles. I hated feeling so vulnerable, however, I knew I couldn’t let this beat me and change the person I was. One way of coping that worked for me was to basically make fun of myself. We would joke that I was like Moses with my cane as crowds would part for me to walk through. Finding humor in these things helped me get through them.

Cane training was hard; I just never thought this would happen to me. In public, I would get odd looks from strangers if I got my phone out. At a music concert, I was harassed because the security guard let me skip the huge queue. Even with massive text on my phone, I was too scared to look at it in case people thought I was faking! I constantly worried about what people would think of me.

When my doctors told me about a charity called RP Fighting Blindness (Retina UK) it was the positive outlet I needed. I organized a successful music event where we raised £1200. After the fundraiser, I wanted to continue being positive and not let this disease define me as a person.

What It Means To Be Blind

Back home in Wales, I continued my cane training. I was terrified when I used my white cane because of the stigma attached to it. So I asked my support worker about the possibility of a cane in a different color. She ordered one for me from Canada and I now own a nice pink one! The fear was still there but it made me smile a little more.

As I continued to struggle with my sight loss, my support worker suggested I consider using a guide dog. I was approved and had few trial runs with different dogs to see how it felt using one. My fear of being out in public disappeared and I didn’t feel so vulnerable. It just felt that I was out walking a dog and I felt better supported. However, I decided to wait until my youngest is a bit older before getting one.

My main goal now is to raise awareness of what it means to be blind. I want people to realize that not everyone is in complete darkness. We can use our phones even if you see us also using a cane.

Often people say, “You don’t look blind?” or “But you can see?” These sorts of comments are why I want to share my story. Yes, I have lost my central vision, but I do still have my peripheral vision. I am not in complete darkness, but I am blind.

Kay Haines collage description is in the body of the post.
Kay After Bike Accident

Falling Down & Getting Back Up

There have been a lot of low points throughout my journey. I’ve fallen down the stairs a few times and was knocked over by a professional bike when crossing the road. But one thing I won’t do is let it get me down.

Four months after we moved back to Wales my Mum got ill and passed away from a brain tumor. She died 4 weeks and 5 days after she was diagnosed. My mum is the reason I want to carry on being positive and why I want to raise more awareness. I know it’s what she would have wanted me to do. She motivates me every day to get up and just deal with it. I want to help others in my situation to understand what it is to be blind. And most importantly to never give up!

I’m hoping my new blog Me Myself and Eyes will help others, not just with blindness but living with a disability. Surrounding myself with my amazing family and friends makes handling the bad days so much easier. I’m hoping that I can be the support that someone needs who may not have the support network to get through day to day.

Kay Haines Featured Image Description:

Closeup photo of Woman On The Move, Kay Haines, with gorgeous blue eyes and coral lip color. She has long dark hair framing the left side of her face.

Additional Images:

  • Kay is outside with her support worker doing guide dog training with a yellow lab.
  • This collage contains two images of Kay after she was hit by a bike. The first image shows her blackened right eye following the accident. In the second image, the eye is healing but still discolored.

You can follow Kay on:

Instagram: me.myself_and_eyes

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Facing Sight Loss With Hope & Grace

Facing Sight Loss With Hope & Grace featured image description is in the body of the post.

Facing Sight Loss With Hope & Grace

My sight loss journey has been long and sometimes painful; however, it has also been full of hope and grace.

Rebecca In Front Of
A Historic Building

I was born with cataracts on both of my eyes (bilateral congenital cataracts). Before I was a year old, I had nine eye surgeries to remove my cataracts and secondary membranes that grew in their place. I also had muscle surgery to keep my eyes from crossing.

When I was four, I developed glaucoma as a complication of surgery. Since my right eye had issues focusing, my doctor recommended eye patching. As a result, I wore an eye patch over my dominant eye for an entire year.

I’ve had fifteen eye surgeries as an adult. The scar tissue from all of these surgeries sometimes causes pain and discomfort.

I can only see colors and shapes out of my right eye and the field of vision in my left eye is severely limited. In addition to having no peripheral vision or depth perception, I also have severe migraines that center around my eyes. My vision fluctuates. On a good day, I can see 20/30 in my good eye with best correction. On a bad day, all I can see are clouds and shapes.

A New Dream & A New Purpose

In college, I suffered a crushing loss. My dream was to become a music teacher; however, an important music professor refused to teach me because he “didn’t teach students with disabilities.” His ableism caused me to need to change my major.

At the time, I was crushed by the loss of my dream. Eventually, I changed my major to English Education because I have always loved words. Sadly, I met resistance there as well. When I was student teaching, I was told, “We’re afraid to leave the students alone with a blind teacher.”

I believe that God put a new dream on my heart and helped to form a beautiful mosaic from the broken pieces of my life. I attended seminary in Washington D.C. and I am blessed to be able to say that I have now completed five years of effective ministry.

In May, my church covenanted with me to always provide me with a job and a congregation to serve. We call this “ordination.” It was one of the most special days of my life. I couldn’t stop smiling. At last, it seemed that I had found my place in the world and that my life had a purpose.

Glaucoma: The Silent Thief of Sight

Although I have been blessed to have benefitted from some of the best medical care in the country at Will’s Eye Institute in Philadelphia, my vision continues to wane. I take five eye drops four times a day and a pill three times a day in order to maintain my eye pressure.

Each year, I lose a little more vision. At thirty years of age, I’m unable to read a book with a regular sized font for any extended period of time. As a person who loves books, this loss is the most painful loss of all.

Beauty from Brokenness

Like many people who are disabled, I have a complicated relationship with my disability. I still have a long journey ahead of me to achieve full acceptance of my sight loss. For example, I only use my white cane when I travel because I need it for safety.

I don’t know what the future holds for me. I don’t know if I will someday become more comfortable using my white cane or if I will ever learn to read Braille; nevertheless, my heart is full of hope. The essence of my job is to share hope with a dark and broken world.

I am blessed to serve a congregation that I love dearly and a church that is striving to become a more inclusive place for people with disabilities. I am also blessed to have wonderfully supportive friends and a spouse who loves me very much.

One thing is for certain: Even with my blurry vision, I can see that the future is bright.

Rebecca Holland blogs about faith, diverse books, and disability awareness at BeckieWrites.com. She has written a chapbook entitled, Through My Good Eye: A Memoir in Verse.

Facing Sight Loss With Hope & Grace Featured Image Description:

Rebecca grins broadly with her hand on her hip as she stands on the Millennium Bridge in London. St. Paul’s Cathedral can be seen behind her. She wears a bright green coat.

Rebecca In Front Of A Historic Building

Rebecca smiles while standing on the stone steps of a historic building. She is framed by a large wooden door. She wears a blue and green A-line dress.