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WOTM 12 Featuring Stephanie Stephens Van

Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence. ~Helen Keller

Stephanie Stephens Van, MA, CLVT
Stephanie Stephens Van, MA, CLVT

“Try another way” are the words that resonated most with me upon meeting Stephanie Stephens Van. An author, lecturer, consultant, instructor and Vision Rehabilitation Therapist (VRT), Stephanie, is one of those people with whom you are immediately at ease.

I met Stephanie a few weeks ago when she came to my apartment to assess me to determine my needs as it relates to performing personal/household tasks with vision loss. This was definitely one of those times when I wondered why it took me so long to seek some professional guidance. My first session with Stephanie was so enjoyable partly because of her sparkling personality, her passionate advocacy for those with blindness/vision loss and her wealth of knowledge on vision loss solutions.

In my teen years I fought becoming a professional in the field of blindness. I wanted to ‘break out’ of what I perceived as a stereotype. ~Stephanie Stephens Van

Even though Stephanie balked at the idea of working in the field of blindness her life’s path led her to this destination. She received her undergraduate degree in Social Work from Edinboro University and went on to obtain her graduate degree from Western Michigan University. It was upon entering graduate school that she gave up on her initial opposition and received her Master’s degree in Rehabilitation Teaching for the Blind (now known as Vision Rehabilitation Therapist in Vision Studies). Western Michigan University by the way was the first university in the country to offer such a degree.

Over the past 32 years, Stephanie has worked in direct service to those with vision loss, non-profit and state funded agencies. She has also lectured nationally other blindness professionals, community organizations and graduate students on a variety of issues on vision loss.

If I were a betting person I would bet that one of the reasons Stephanie has taken the path set before her has been a direct result of her upbringing. Some parents of children with disabilities sometimes unknowingly coddle the child thinking they need more protection. Stephanie’s parents allowed her to explore, fall down and pick herself up. In her own words she says “It wasn’t always fun, but I am grateful to them when I look back.

In addition to her work and being a passionate advocate, Stephanie also loves creativity and art as one of her vocational dreams early on was to become a full-time artist. She’s published articles and 3 versions of her book, Craft Adaptations for Adults with Vision Impairments (copyright 1998, 2008, rev. 2013).

I wish to share this creative streak with those who are blinded and believe they cannot be creative. I believe in my heart that creativity calms the senses while enhancing the mind and productivity. ~Stephanie Stephens Van

Stephanie has also written several articles posted on VisionAware including:

Stephanie, thank you for being my encourager and giving me excellent advice and tools to do those things that gave me headaches. I relish the thought of freeing up some extra brain space. You are a remarkable woman and I’m so blessed to have you in my life.

“Try another way” is one of Stephanie’s personal mottos that she lives and teaches.

“I have never had to face anything that could overwhelm the native optimism and stubborn perseverance I was blessed with.” ~Sonia Sotomayor

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A Shot in the Dark

Shooting Down Assumptions

Acrylic Makeup Cosmetics Organizer Luxury Crystal Insert Holder Box www.amazon.com
Acrylic Makeup Cosmetics Organizer Luxury Crystal Insert Holder Box
Amazon

Long before I lost my eyesight my middle son, Devon, was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). To the casual onlooker, if Devon was having a good day, he would not appear to have anything wrong with him. If that same casual onlooker had the opportunity to spend some time with Devon they would soon need nerve medication.

Devon’s ADHD was a hidden disability that began long before his diagnosis at 6 years of age. From head banging as a baby, behavioral problems at 4 daycare facilities to never finishing kindergarten because he was expelled, to say he was a challenge is putting it mildly. I remember one of his daycare teachers telling me she just didn’t understand it because he was such an adorable, loving child. Every morning he would come and give hugs and kisses to his teachers and then later in the day something inside him would snap.

Upon the ADHD diagnosis the doctor told me that the mechanism in Devon’s brain that should keep him from acting compulsively was broken. This was why he acted out and just kept me on the edge of my seat. Life with little Devon was never boring and his disability was my introduction to the special education system and advocacy efforts on his behalf.

Devon is completely fine today and is a graduate of Indiana University of Pennsylvania. He majored in psychology and minored in music and is looking to start his own business.

Having experienced inaccurate assumptions first-hand, I remind myself things aren’t always as they might appear. The other piece that bears mentioning is the struggle for people who have hidden disabilities is multilayered. While some of us may choose to keep our disability under wraps there are others who want to be taken at face value without judgment.

Take cosmetics for example, wouldn’t you think it would be rather odd for someone to say to a person wearing makeup “You don’t really look like that…?” Likewise, when someone has a hidden disability and they self-identify, we should be mindful to do so takes courage and filter out our assumptions.

Makeup can be such a wonderful ego boost and it is so much fun to experiment with different types of cosmetics. For us blind and vision impaired ladies though it can be a bit of a challenge it’s definitely doable especially if we’re organized.

Visual clutter is a term I heard recently and it something that can be very distracting for people with low vision. Minimalistic is word that I’ve always liked for its simplicity.

How do we get rid of visual clutter with cosmetics? Paring down to just the essentials is really only the beginning. Organizing and labeling your makeup will help you in being able to readily locate any of your cosmetics. Investing in an organizer that works for you is worthwhile.

The 2-piece acrylic holder that I got from Amazon works best for me because it’s see-through and I like that I can put everything in one place. Also, it’s the perfect size that lends to ease in keeping it neat and tidy.

There are a total of 4 drawers (2 side by side at the top and 2 longer ones directly underneath). The inset piece that I sit on top of the drawers can actually be used as a stand alone. The unit measures 9.4 inches wide by 5.1 inches deep by 7.5 inches tall.

Since I know exactly where each of my cosmetics and tools are I don’t feel the need to label the drawers on the organizer but if I change my mind at a later date I can do so at that time.

“Whether I’m wearing lots of makeup or no makeup, I’m always the same person inside.” ~Lady Gaga

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WOTM 11 Featuring Fatmatta Wurie

Fatmatta Wurie of Maono Ya Chini featured image description is in the body of the post.

WOTM Featuring Fatmatta Wurie

“I want to change the face of Information Technology for the Blind and Visually Impaired community. And once I do that, it is nothing to change the views and ideas of society.” ~Fatmatta Wurie

Maono Ya Chini

Maono Ya Chini is a blog created by Fatmatta Wurie, a young woman, who was one of the first bloggers I interacted with when I began blogging. Sharing a mutual understanding of sight loss, brought Fatmatta and me together. A college student majoring in Information Technology (IT), when she received her diagnosis she was embarking on young adulthood. 

When I first saw the words Maono Ya Chini, which means low vision in Swahili, I really liked their exotic sound. At the same time, I admired Fatmatta’s personal story and her approach to handling sight loss. “Seeing life through different eyes,” the tagline of Maono Ya Chini, seems to be the path Fatmatta has chosen to pursue her dreams.

Like many others who lose sight, Fatmatta went from grief to acceptance and finally the desire to help others. Her diagnosis of hereditary macular dystrophy caused her to make significant adjustments in her life.

Diseases of the eye affecting the macula, impact central vision which interferes with a person’s ability to perform daily activities. Activities like identifying faces, grocery shopping, reading newspapers, menus, ATMs, currency, and watching TV, are just a few. Safety concerns like falling risks, disorientation, medication-related errors, crossing the street, cooking, and bathing are real issues. Issues seldom considered until one has to face the prospect of living with vision loss. Add to it coping with the emotional impact of losing sight and independence it is a truly life-altering experience.

After researching her diagnosis and following up with a retina specialist Fatmatta found that she had Stargardt disease. Imagine receiving this type of news as a 19-years-old, at the beginning of your professional career.

“Being an Information Technology student, I am immediately drawn to being innovative, inventive, imaginative and creative.” ~Fatmatta Wurie

It’s impressive that is it’s only been three years since her diagnosis and Fatmatta yet is an advocate. She’s volunteering and connected with other people experiencing vision loss to build a community of like-minded go-getters.

On her blog, Fatmatta shares lots of low vision and disability awareness resource information. She also documents personal thoughts from her journaling and re-blogs articles of interest. Due to the demanding nature of being a full-time college student and blogging she manages her time well.

Fatmatta you are an inspiration and I am hopeful that you will indeed change the world!! Your youthful zeal and enthusiasm are contagious. Keep up the good work my friend.

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WOTM 10 Featuring Suzanne Gibson

River’s Edge

Photo of Suzanne Gibson
Suzanne Gibson

Friday’s have always been my favorite day. When I was in the corporate world it was a welcome prelude to the respite of the weekend to come. Today, I become re-energized by featuring strong, independent, influential women who happen to share a common thread of blindness or low vision.

In preparing to write these pieces I always ask the person I’m writing about for permission and request that they send me a couple of paragraphs to work from. For those with websites and social media users I can glean interesting, informative, and inspirational data that makes for a good narrative.

My advice to every young person who crosses my path, everyone actually, is to keep pursuing what it is that you love. If you are creative, create. Do not be too busy; do not tell me about your limited budget. Find a way to do something. I did not always follow this advice. I became distracted many times with life.

Suzanne Gibson, a very talented local artist who owns River’s Edge studio in New Brighton, PA, is no exception to the unbelievable fortitude of people I hold in the highest regard. Prior to contacting her, I saw some articles written about her in a few of our local newspapers.

Suzanne Gibson Painting His Majesty (a very colorful majestic bird)
Suzanne Gibson
“His Majesty”

I knew Suzanne experienced vision loss and yet she was still passionate about her art. What I didn’t know were the other extraordinary circumstances she went through that were unrelated to her loss of vision.

The tumor was growing again, and I would need radiation. The daily radiation treatments lasted 6 weeks, but recovering took much longer. To add to this challenge, the week after I finished radiation, I received the news that my visual acuity was 20/200 and that I could no longer drive.

I think for most of us, to receive a simultaneous diagnosis of vision loss and a brain tumor, would be devastatingly frightening. Just when Suzanne was beginning life anew as a painter she had to endure this inconceivable news.

After her first brain surgery, Suzanne’s inspiration to keep moving forward was found in the works of blind artist John Bramblitt. She began painting canvasses and contemplating her second chance at life. While Suzanne was considering the direction her life would take next, life dealt her another blow.

The brain tumor was back. After another brain surgery and a 6 week course of daily radiation therapy, the recovery period this time around was considerably longer than the first time. With the added complication of worsening vision, Suzanne was introduced to adaptive devices to aid her in continuing to paint and live independently.

…without Lex Luther, there is no Superman and without this ‘disability’, I would not be painting the way that I do. This vision loss that could have struck me down has, instead, led me to explore myself and dig deep into my soul to paint expression and feeling.

During the experimental painting phase, while using the adaptive devices, there were some initial disappointments but then Suzanne created a piece aptly named Enjoy the Moment.” When I look at this painting I’m reminded of an indescribably beautiful summer day. The explosion of reds, yellows, oranges, greens, blues and purples along with the curves and angles of the two flowers tickle the senses. I can even imagine feeling the warmth of the day while hearing the birds sing as I inhale the sweet scent of the flowers. It’s a beautiful moment. The success Suzanne gained by this painting gave her the confidence she needed to continue her craft.

Suzanne Gibson Enjoy the Moment
Suzanne Gibson
“Enjoy the Moment”

Suzanne sent me 3 of her paintings which I’ve included in today’s post. I like and appreciate all 3 for different reasons but ‘My Nemesis was the one that really spoke to me. As soon as I saw it, without knowing what the cause of Suzanne’s loss of vision, I thought “this reminds me of my central vision loss.” So when I looked at an essay she wrote with the same name as the painting it clicked.

Suzanne Gibson Painting "my nemesis"
Suzanne Gibson
“My Nemesis”

Suzanne was diagnosed with Stargardt Disease an inherited vision disorder with macular degeneration that typically affects younger people. The macula, located in the center of the retina is responsible for detailed central vision needed to read, drive, recognize faces, etc.

Suzanne, you are an amazing example of what a person can achieve even when faced with adversity. Your strength, determination, and courage are admirable and you are a remarkable role model.

I’d like to encourage you to visit Suzanne’s website at www.riversedgestudio.com to see some of the offerings. In ending today’s post, because I like Suzanne’s philosophy on life, I’m using one of her quotes.

“My advice remains the same: enjoy the moment- do not wait for tomorrow. You do not know what that day will bring. However, when you do reach tomorrow and it is not what you thought it would be, REVISE!” ~Suzanne Gibson