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WOTM 9 Featuring Emily Davison

Featuring Fashioneyesta – Prepare to be Awed!

I find it interesting how we can meet people in this high-tech virtual world we live in and feel a kindred spirit that can’t be duplicated even in face-to-face interactions. For me Emily Davison is one of those people who, while there is a span of decades between us, we share common philosophies.

Collage of 6 Images of Emily Davison Fashioneyesta.com
Emily Davison
Fashioneyesta

Emily, who spent her entire life in South East London, is currently studying for a degree in English Literature at Goldsmiths University, London. As a Journalist on the Huffington Post UK, Emily simultaneously works at the University as a paid Student Ambassador. In July 2012 she founded Fashioneyesta an online Fashion and Lifestyle resource for blind and partially sighted people.

Fashioneyesta.com serves to present visually impaired people with the tools, the skills and, the knowledge of fashion, beauty and, style to enable them to use their remaining senses to gauge the world of fashion and to create their own unique style.

An advocate at her core, Emily also works with a number of different charities and organizations to raise awareness of Fashioneyesta. She functions as a fashion correspondent alongside the Royal National Institute of Blind People (RNIB’s) Insight Radio and Able Radio.

Being blind or visually impaired does not automatically mean that you have to be unfashionable. That is the message at the crux of my blog “Fashioneyesta.”

Fashion has always been a huge element of Emily’s life. When she was growing up, she was captivated by old Hollywood films and style icons like Audrey Hepburn and Grace Kelly. The fashion houses, vintage stores and many delightful chic-lits were the inspiration for her to delve into the history and the beauty of fashion. By the time she was 14, her mother bought Emily her first designer bag and the rest as they say, is History!

“Fashioneyesta” aims at giving visually impaired people the right set of knowledge and skills to be able to develop their own unique style.

Emily describes her style as feminine, with exotic flares, vintage twists and a lot of costume jewelry. She’s very versatile and changes her look as her mood dictates. One day, she may step out in an Asian inspired outfit and on another day go full-out Vintage with Victory Rolls and a 1940s inspired tea dress.

My thesis as a fashion blogger is that style should reflect your own personality and that you should put your own stamp on an outfit.

Septo-optic dysplasia, a rare congenital anomaly, is the condition responsible for Emily’s visual impairment. The condition has disabled her optic nerves, leaving her with no sight in her right eye and 10 percent central vision in her left. Even with this debilitating disability Emily has not allowed it to hinder her love for fashion.

Now, with her beautiful Guide Dog, Unity, in tow, Emily is exploring the world and expanding her blog. A blog that she hopes will inspire other visually impaired people to embrace fashion, old and new, to find their own unique style.

Always remember to be daring and don’t conform to what society expects you to be!

Mainstream media is good for bombarding the public with news of gloom and doom. In such a fast-paced world as we live in today I am always overjoyed to hear about young people taking it upon themselves to make positive change happen. Emily you are to be commended for your selfless volunteerism and your dedication to banishing the aged-old stereotypes of blind and vision impaired people. Thank you Emily for all you do. Because of you we are one step closer to eliminating the erroneous misconceptions by education and building awareness.

For more information on Fashioneyesta or Emily Davison please see links to her social networks at the end of this post.

“The best way to gain self-confidence is to do what you are afraid to do.” ~Author Unknown

Social Links

“My blog is featured every week on RNIB’s Insight Radio at 2:15 pm on the Daily Lunch every Friday. I have also been featured on BBC4’s inTouch radio. I do regular blog posts every week, they cover different topics from certain styles and how to achieve them to a selection of my top picks for a particular month.”

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WOTM 8 Featuring Jule Ann Lieberman

“Not faking, not amazing just living the best I can beyond vision loss”

Happy Valentine’s Day!!

Jule Ann and Johann (her guide dog)
Jule Ann and Johann

The title of today’s Fierce Friday sums up the life’s journey of Jule Ann Lieberman’s progressive vision loss. At a mere 9 years of age, holding books closer to read, not being able to see her teacher’s face or the blackboard beyond ten feet, were the first clues that there were issues with Jule Ann’s sight.

After several years of visits to the ophthalmologist without any signs of visible improvement, even with eyeglasses, Jule Ann eventually was led to a retinal specialist in Philadelphia. It was at this visit both she and her sister would be diagnosed with Stargardt Macular Dystrophy.

…much of my life has been in work with persons with vision loss or blindness including my recent Master of Science degree in Low Vision therapy and certification.

Stargardt Macular Dystrophy, the most common form of juvenile macular degeneration, is a genetic eye disorder that affects the retina and causes progressive vision loss. The macula (center of the retina), is responsible for sharp central vision, which is needed for detailed tasks like reading, driving, and recognizing faces.

Jule Ann’s challenges became greater during her junior year in high school as reading demands increased while her vision decreased. Prior to this point she was able to maintain honor roll status by putting in many extra hours struggling to read print. If not for the astute observation of one of her teachers who investigated support systems for her, Jule Ann’s outcome upon graduation could have been very different.

One of the things that made the most impact early on was Jule Ann’s tireless self-advocacy. Since she knew her vision loss impacted many facets of her life she would speak up to get her needs met. In school she would ask for a front row seat to be closer to the chalkboard. On an adventurous solo trip using both regional rail and trolleys to an unfamiliar area in Philadelphia, at 17 years old, unable to read the street signs sounds scary but Jule Ann managed by asking passersby for directions.

One thing that has not changed is my advocacy efforts. From those early days of asking to sit forward, requesting assistance while traveling and workplace accommodations I needed to develop skills in advocacy.

Amazingly it wasn’t until the Pennsylvania state agency, the Office of Vocational Rehabilitation Bureau of Blindness & Visual Services (OVR/BBVS), took over services for Jule Ann as she entered college that she had her first low vision exam. At this exam she was introduced to microscopic reading glasses, and a monocular telescope but it was this terrific reading device then known as a closed circuit television (CCTV) that completely astonished her.

One of the most touching moments as a mother came when my daughter announced to an entire congregation at church that her mother provided her with much more than rides to school, or other vision related task as I taught her resourcefulness and independence.

Jule Ann says that her professional success is due in large part to the support, patience and understanding of her family. Her husband of 31 years has coped with her ever-changing vision and her three children had to grow up with a Mom who had to “do things differently” from their friend’s mothers.

My two sons learned patience and respect for persons who are different from life with their mother. This I think makes us all better that we have such considerate young men.

Many times throughout her life Jule Ann found it necessary to explain that she is vision impaired and that glasses would never help. Learning how the eye functions at a very young age and why her retinal damage resulted in poor vision boosts Jule Ann’s confidence during her “teaching moments.”

As you can tell, I am neither faking nor amazing, but a wife, mother and professional who lives the best life.

I’ve had the pleasure of working with Jule Ann on a committee on which we both serve and met her in person at our Pennsylvania Council of the Blind Annual State Convention. She is such a positive influence on my life and I consider her a go-to person especially on education, technology, functional vision, and advocacy concerns. She’s bright, fearless, and confident and I think the world of her.

“The act of discovering who we are will force us to accept that we can go further than we think.” ~Paulo Coelho

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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