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WOTM 7 Featuring Karen Rowie

“Friendship is unnecessary, like philosophy, like art… It has no survival value; rather it is one of those things that give value to survival.” ~C. S. Lewis

Today I felt moved to talk about a friend of mine who probably doesn’t even know how she’s affected my life. When I think of the paradox of how fearful I was of blindness, then enduring my vision loss, I sometimes wonder if becoming friends with a blind girl somehow prepared me for what was yet to come.

My very first personal foray into the world of blindness was when I introduced myself to Karen Rowie. Karen was a couple of years younger than I and I remember when the neighborhood kids would be playing outside Karen would sit alone on her porch.

I would love to be able to say that it was on my initiative that I met Karen when in fact my mother instructed me to do so. My mother and I always had somewhat of a strained relationship but this one simple act of kindness, she demanded I do, would change my life in such a way that even today I still feel the impact.

It was with trepidation that I approached the steps to Karen’s porch and I was seething with anger that my mother was making me do something that felt so uncomfortable. Fear of saying or doing the wrong thing enveloped me like a cloak because the only prior exposure I had to blindness was what I learned in school about Helen Keller.

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.” Henri Nouwen

One of the things I didn’t understand about Karen, and until recently didn’t know there was even a word for it, was that she exhibited blindisms. Blindisms are behaviors sometimes found in blind children such as body rocking, head swaying and eye rubbing. I don’t know why Karen moved like she did and after I got to know her it really didn’t matter.

After I got over my initial awkwardness of meeting Karen, I enjoyed hanging out with her. We would go to the movies (I would narrate), take the bus into the city (Pittsburgh) and go to what is now called the Western Pennsylvania School for Blind Children.

Karen’s parents were very protective of her and because of this she was not allowed to leave the porch. So I would sit with her while she would read to me one of her Braille books or I would do likewise with a printed version. At times some of the other neighborhood kids would come by as well and Karen would get so excited to have attention lavished upon her.

“One of the most beautiful qualities of true friendship is to understand and to be understood.” Lucius Annaeus Seneca

Karen was such a sweet person and I may not have known it then but I realize that having her come into my life was a defining moment. What I learned from my friendship with her was that she was like any other kid who wanted to laugh, play, go to the movies and be accepted by her peers. I also learned that Karen’s blindness was only one of many characteristics which added to her uniqueness.

It’s been many years since I’ve last seen Karen and wherever you are I just want to thank you for being my friend. If by chance you see this post please contact me by email at boldblindbeauty@gmail.com.

Thank you

Steph

“Walking with a friend in the dark is better than walking alone in the light.” ~Helen Keller

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WOTM 6 Featuring Libby Thaw

WOTM Featuring Libby Thaw

Libby The Visionary

Collage of Libby Thaw (one picture of Libby performing at the microphone and two headshots of her)
Libby Thaw

In December, 2009 it had been 6 months since I was declared legally blind and it felt as if everything in my life was spiraling out of control. Since my vision loss is a hidden disability this was one of the most challenging aspects of the ordeal. It was right around this time that I met Libby Thaw who offered me a lifeline.

The feeling of isolation one can experience when they lose their vision can leave you with a paralyzing fear that you can never make it out of the dark abyss. Because I knew I wasn’t emotionally ready to use the white cane Libby’s Checkered Eye Project (CEP), an international low vision awareness effort, was the perfect solution for me.

“Everybody, including people with disabilities, makes assumptions. Problems arise when we are not open to learning our assumption was wrong.” ~Libby

Libby Thaw, a wife and stay at home mother who resides in Port Elgin, Ontario Canada founded the CEP in 2000. I remember during one of our many conversations Libby told me the CEP idea evolved out of a chat with a couple of like-minded individuals. The concept was simple and revolved around a discreet hands-free option for people with low vision to self-identify to let others know of their disability.

Libby, who also happens to be legally blind, understands the difficulties one encounters with loss of vision. On one hand, people with low-vision can be challenged with day-to-day tasks yet on the other hand, to the general public, their disability is not apparent. It’s because of this hidden disability that Libby designed an emblem representative of, and for those impacted with, significant vision loss.

The CE is a pin, patch, or button, which may be worn to subtly indicate its wearer has partial blindness, also known as low vision. In addition, the CE creates a unique opportunity for open dialogue to build awareness on low vision and what the symbol represents.

Personally, I can attest to the sense of empowerment I gained when using the CE. Since I had no control over the loss of my vision at least I could control who I chose to make aware of my situation. And even though I do need to use the white cane now I still wear my pin to increase its visibility.

Libby who has Stargardt disease, the most common form of inherited juvenile macular degeneration, is a motivational speaker, writer, and entertainer (you really should hear her sing). I had the chance to host Libby as my guest when she came to Pittsburgh to attend the Foundation Fighting Blindness’ Pittsburgh VisionWalk back in 2011.

Music gives me a great feeling of oneness. I like to take in the sense that we are all in it together; the musicians are obviously in on the cooperation, but the crowd has lots to do with it too. I’m so glad my eyesight doesn’t hinder that. In fact it probably augments it. Since I can’t see people’s facial expressions I project my own ideas of what their movements and body language are saying. ~Libby

Upon meeting her at the airport I was immediately struck by Libby’s energy and enthusiasm. The weekend was a flurry of activities that included a stop at Pittsburgh Blind and Vision Rehabilitation Services for a tour of the low vision facility and an opportunity for Libby to talk about the CEP.

To each eating establishment we went during Libby’s 2-day stay she would ask the host/hostess if they had large print menus and this opened the door for further discussion about the CEP. It was refreshing to see someone actively self-advocating while at the same time bringing attention to an issue impacting many people across the U.S. and worldwide.

In October of 2013, Libby was invited by the California Council of the Blind (CCB) in San Diego, California to attend their annual state convention. Not one to pass up an opportunity to spread the word on the CEP Libby packed her bags and traveled to the CCB’s convention. She wrote a very insightful blog on the trip which you can peruse at your leisure by clicking HERE.

I would be remiss if I didn’t mention that the CE is not a mobility or safety device, rather it is a tool for face-to-face interaction only and its use is a matter of personal choice which gives the wearer the option of determining with whom to share their vision loss. If you or someone you know would be interested in learning more about the CEP Libby can be contacted directly by email at info@checkeredeye.com or you can visit her website at www.checkeredeye.com.

If you have any questions or would like additional information from me please leave a comment below or email me at smccoy@boldblindbeauty.com.

I think the following quote accurately sums up today’s bold blind beauty. Libby, I want to thank you for being you and in so doing being a positive role model and a ray of hope for people impacted by vision loss.

“We should be taught not to wait for inspiration to start a thing. Action always generates inspiration. Inspiration seldom generates action.” ~Frank Tibolt

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WOTM 5 Featuring Amy Hildebrand

WOTM Featuring Amy Hildebrand

There’s nothing more we can do for you…

Photo collage of Amy Hildebrand, ourtesy of PetaPixel.com
Amy Hildebrand, photo courtesy of PetaPixel.com

If you’ve experienced severe vision loss you’ve probably heard these words before and their impact can be devastating. Imagine then, the excitement on the birth of your first child and upon delivery, when the doctor places the baby in your arms he tells you that your baby is blind and has a genetic disorder for which there is no cure. This is what happened to Teri Shields the mother of Amy Hildebrand, the young woman I’m featuring in today’s Fierce Fridays.

“…and the doctors told my parents I was blind. My mom was 20, my dad 24, and as if they didn’t receive enough shock when the doctor placed a white haired baby in their arms, he then proceeded to tell them that I had a severe case of Albinism, and that there was nothing they could do to “fix” me.”

After Amy was born, the doctors told her parents that she wouldn’t be able to do a lot of things because of her blindness due to severe albinism. Albinism occurs when one of several genetic defects makes the body unable to produce or distribute melanin, a natural substance that gives color to hair, skin, and iris of the eye.

The National Organization for Albinism and Hypopigmentation (NOAH) states that approximately 1 in 17,000 people in the U.S., has some type of albinism. Vision problems that are not correctable with eyeglasses occur in all people with albinism however the extent of visual impairment differs depending on the type of albinism.

While Amy’s albinism makes her unique, I was struck by her resolve to prove the doctors wrong as detailed in an excellent article by Susan Donaldson James (ABC News). One of the things that impressed me most; aside from the fact that Amy’s a wife, mother of 2, professional photographer, and Best Day Ever business owner is her tenacity.

Back in 2009 Amy challenged herself to a 1,000 day journey where she would shoot a photograph that summarized each day and then post to her blog, With Little Sound. She started her challenge on September 14, 2009 and ended it with the 1,000th photograph on June 12, 2012. I have not seen all of Amy’s photos but I can tell you the ones I did see were awe-inspiring. It takes special fortitude to make a commitment and follow through like Amy did on this challenge.

During an interview in 2012 with Rachel Devine and Peta Mazey of Beyond Snapshots, Amy was asked “What is it about this project that speaks personally about you?” “Thankfully my parents weren’t the type to believe everything they hear, and so they started searching for doctors who had studied the albino eye, in hopes there might be some way I could gain my sight back. Ironically enough there was a young medical student here in Cincinnati that was wanting to research the affects of contacts on infants’ eyes. My parents eagerly signed on the dotted line, and at three months I had my first pair of contacts.”

“A few weeks later I was grasping for shadows and the experiment was deemed a huge success. The med student and I were written up in medical journals across the country. The next twelve years or so I was fitted for all different types of glasses and contacts, but around fifth grade I sort of topped out. I can still remember those early days though, around the age of 2 or 3 studying shadows and light on the kitchen floor of our apartment. I think even then I knew how lucky I was.”

When I read the above excerpt I had goose-bumps and I realized that Amy came by her steadfastness honestly. To put oneself in the place of her parents who fought valiantly on her behalf so that Amy would have the same opportunities in life as her sighted counterparts speaks volumes.

“My photos are sometime straightforward and sometimes more imaginative, but I treat every one with the mindset that I never would have seen these amazing images if it had not been for my parents, that med student and God’s grace.”

After reading the Beyond Snapshots interview and the ABC News article, I was not surprised that Amy would eventually come to love and then become a successful photographer. Amy, you are a remarkable person who is proof that in the paraphrased words of Jesse Jackson “if the mind can conceive it, the heart can believe it, then you can achieve it”!

If you haven’t already done so by clicking on the links provided in this post you can visit Amy and her husband Aaron’s website at Best Day Ever.

“Strength does not come from physical capacity. It comes from an indomitable will.” ~Mahatma Gandhi

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Telling Our Stories…|Empish Thomas

Telling Our Stories featured image description is in the body of the post.

Telling Our Stories…|Empish Thomas

The following article was lightly edited and updated. Our featured Woman On The Move is someone I’ve only met virtually by conference calls, email, and phone. Empish and I serve as Peer Advisors for VisionAware and in this role, we offer advice and helpful tips to those new to sight loss. Empish is a prolific writer, advocate, and mentor. She has also been an invaluable resource to me and a voice for blind and visually impaired people.

My Journey as a Blind Writer and Editor

“From the time I was a small child I have always been intrigued by the written word. From checking out children’s books at my local library to reading the newspaper out loud to my parents. Words have always moved and compelled me.” 

~Empish Thomas

Fast forward to my adult life. With a journalism degree and a disability, I focused my career on writing stories and advocacy for people in my community. I noticed the negative and sometimes incorrect portrayal of the disabled in the news media and became proactive in changing that image. I believe language is powerful and people with disabilities must tell their own story. Hence the Nigerian proverb “Don’t let the lion tell the giraffe’s story.”

So here’s a little bit of my own tale

My journey as a visually impaired writer started about 20 years ago. After finishing my rehabilitation training at the Center for the Visually Impaired (CVI), I volunteered to write and edit their newsletter. Eventually, the volunteer opportunity blossomed into a paid position. In this new role, I provided information and resources to people with disabilities. Simultaneously I worked part-time as an AmeriCorps member providing peer support and advocacy.

Later, I launched my freelance writing career with an emphasis on the disabled and landed a column in Dialogue Magazine. I wrote career profiles on people who are visually impaired as a direct result of my passion and journalism experience. In each issue, I profiled people successfully working in a variety of career fields from education, government, science, self-employment, arts, and entertainment.

In addition to my column, I worked at CVI as their Public Education Manager. I conducted facility tours, managed exhibit booths at community/resource fairs, and posted InfoLink, our community bulletin board. I’m also a public speaker for United Way and manage our speaker’s bureau. Recently, I entered the blogosphere by managing CVI’s website blog called Sightseeing. This was an exciting undertaking for me as I:

  • blogged about issues that impacted the blind community,
  • solicited guest bloggers,
  • researched story ideas and
  • planned the editorial calendar.

Volunteering within the blind community

And if all of this was not enough I volunteer in the blind community as well! I am a peer advisor and blogger for VisionAware. On this site, I lend my professional and personal experience to people experiencing vision loss. I’ve volunteered with the American Foundation for the Blind’s Career Connect. Here I interacted via e-mail with others interested in pursuing a journalism career.

Previously, I was a volunteer producer for a monthly hour radio show for the blind called “Eye on Blindness.” The show was sponsored by the Georgia area Radio Reading Service (GaRRS). It was an interview-style program which featured special guests who provided information on a variety of topics such as travel, employment, health, and politics.

I am proud that I’ve been able to take my education, disability, work, and life experiences, and combined them. Not only do I have a rewarding and meaningful life but a fantastic career that I absolutely love!

Connecting With Empish:

Telling Our Stories Featured Image Description:

Empish Thomas is seated at CVI Exhibit Table at Coca-Cola’s Disability and Diversity Awareness Fair.