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WOTM 39 Featuring Silvia Seyringer

Stanley & The Staircase To The Light

Silvia (white cane in hand) and her daughter (wearing Mickey Mouse ears) are posed standing in Disneyland.I am a survivor. I tell myself this every day, so it must be true! When I found out I was losing my sight, I was devastated, but although it was a harrowing and speedy process, it was not the worst thing that had happened in my life. Having gone through worse and survived, I knew I possessed the key to letting myself out of this dungeon and I knew the staircase to take to see the light again (pardon the pun!)

The first sign I was losing my eyesight was a rare cataract condition resulting from damage inflicted on my eyes as a child. After operations and exploration of the nerves, it was discovered that I had an additional, rarer condition: juvenile macular degeneration, rods and cones dystrophy. Instead of viewing the world through rose-colored glasses, I view the world through a blue lens, with black polka dot spots! (I still see through rose-colored glasses metaphorically, though.)

It was extremely hard for an independent person like me to adapt to the seeming lack of freedom when sight had deteriorated such that I was provided a white cane by Vision Australia. I absolutely detested asking for help. My daughter helped as much as her busy life allowed, guiding me on her arm whilst I used the cane (Stanley) to navigate uneven ground surfaces. Why Stanley? Because I couldn’t stand ‘him’ but essentially, he led me around, plus a reference to black and white era comedians, Laurel & Hardy (Stan being the extremely skinny one!) A very wise woman had recommended naming your cane. It makes it more personal and like a member of your family, whom you need to accept.

We had planned a trip to Disneyland because my daughter missed out on another trip, so this was to be our time together. Little did we know that by the time we left Sydney, I would not be able to see beyond 10cm from my face. Working our way through those throngs of bodies, everyone out to get to where they were going as fast as possible, is a story in itself. I was so grateful that I had a solid body to hold on to and that Stanley announced that I could not see ahead of me. It made it so much easier for others to accept that I had not walked into them deliberately or bumped them with intent. When people are rushing (especially in huge crowds), there sometimes isn’t even the time to apologise properly, so a glance at a cane alleviates this courtesy.

Needless to say, my favorite ride was Space Mountain (which is set entirely in the dark). I could really enjoy that one as I could relate! The non-vision impaired screamed in terror, I just screamed because the sensations of going through space without seeing what was ahead of me was so eerily familiar! And because I was strapped in, I felt safe and it was fun when compared to the unpredictability of day-to-day travel.

Having lost the use of my sense of sight to a large extent meant that I really had to use my brain. I am beyond thankful that my memory still functioned and I could work out where to go using logic when I couldn’t see. I learned to really listen for train station names and sounds after missing my (extremely well-known) stop so many times because I couldn’t recognise it anymore. Trying to ask for directions (or even just to find out where you were) was problematic in a city of 5 million people; no one has patience or time for you, however, at one glimpse of the cane, people were immediately more forgiving and accommodating.

I realised I had to stop working when I didn’t see clear glass and broke many beakers in my laboratory at work. There was a bit of an existential crisis when I realised I couldn’t work as a scientist – “Am I still a scientist?” I need to transition to theoretical science rather than conducting practical experiments. Or retrain altogether, in a different field.

Every day is a challenge but as time goes by, it becomes the norm as you get used your new way of being. And it is not so bad, as many unexpectedly good things have come from being differently-sighted. I now regard it as a blessing. I have gained so much more in terms of valuing life and experiences. At the conclusion of each day, I give thanks that I was privileged to experience it, no matter that the shape and look of these days is different to all those previous years.

Image: Silvia (white cane in hand) and her daughter (wearing Mickey Mouse ears) are posed standing in Disneyland.

I met Silvia on Instagram and was immediately captivated with her photography. Not only does she take breathtaking photos but her descriptions are sublime. You can connect with her via @silviasalzburg to enjoy her craft.

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WOTM 30 Featuring Joy Thomas

“I don’t understand why I didn’t get the job”

Thomas03142016-31
Photo Credit: Morry Angell, Guide Dogs for the Blind

I said to my supervising teacher, “You gave me such stellar reviews from my student teaching, and I feel like I described my teaching style and goals really well in my interview. I have a 4.0 GPA, and the students loved me! Did the principal say anything to you about why he didn’t hire me?”

My supervising teacher hesitated

“Well, um, he did mention that you didn’t maintain strong eye contact throughout the entire interview. He said your eyes didn’t always follow where he was pointing when he was explaining the school set up. He said your eyes kind of trailed off, and it made him skeptical about you.”

Her words came as a swift, unexpected punch in the gut

Photo Credit: Morry Angell, Guide Dogs for the Blind

That was 13 years ago, and I cringe thinking about the conversation, but not because I am embarrassed about my eyes like I was then. I cringe now because I remember how much time and energy I wasted trying to hide my vision loss.

The principal had no idea that I literally couldn’t see his finger when he moved it even a half inch to either side, much less follow the sweeping motion of his hands. My supervising teacher knew about my loss of peripheral vision and even that I was legally blind, but I had asked her not to say anything because I didn’t want it to keep me from getting hired. I didn’t use a cane in my interviews, or really much at all at that point in my life because I didn’t want to look “blind”.

Fortunately, my supervising teacher did not listen to me when I went to my next interview, choosing instead to mention my vision loss as one of my strengths, stating how hard I worked and how well I communicated with the students to compensate for my vision loss.

 

That principal hired me

Joy Thomas-7
Photo Credit: Morry Angell, Guide Dogs for the Blind

I held my own as a middle school English teacher for several years, but I continued to struggle much more than I needed to because I still spent a great deal of time and energy trying to do everything the “sighted” way. I still felt very ashamed of my vision loss, and I think that came across to my students and colleagues. I always felt that I was just one incident away from disaster. I had several incidents where parents thought I had purposely ignored them in passing, and one even complained to the school dean about it. These incidents unnerved me and made me feel like people were getting closer and closer to finding out the truth about me. The truth that, because of my eyesight, I was incompetent.

When a 7th grader with special needs fell asleep while I was reading a book to the class, and I failed to notice him sleeping outside of my line of vision, the special education teacher’s aide reported this to her, and she stormed into my classroom and demanded an explanation. I spoke with her privately about my vision, and she was irate and said that she couldn’t trust her students with special needs in my classroom. I became terrified that she would “tell on” me to administration, and since the principal who hired me was no longer there, I wasn’t quite sure if the new principal even knew that I was visually impaired and how he would feel about it. Since I was still one year away from earning tenure, I knew that the school could legally lay met off at any time, without giving any reason, so I would never even have a case if anyone discriminated.

So, despite my outstanding observation reviews and the fact that I was a creative, organized teacher and had spent 2 years and a small fortune getting my master’s degree, I chose to resign from my job because of fear and shame. I figured that if I were the one who quit, there would be no chance of me ever being fired.

I was consumed with blending in and not appearing weak, which took away all of my strength

Thankfully, I’ve come a long way over the past 9 years since I left my teaching job. I now get around very well with the help of a guide dog. I have also acquired technology and housekeeping skills to make everyday life more accessible.

Ironically, now when I use my guide dog, people continue to make comments about my eye contact, except the exact opposite opinion from that first principal. “But you don’t LOOK blind. You’re looking right at me and making eye contact!”

That’s the tricky thing about degenerative eye conditions like Retinitis Pigmentosa (RP). Whether you’re using a mobility tool or not, people are constantly asserting that you have “not enough” or “too much” vision. It’s like visual purgatory.

When you linger between the worlds of sight and complete darkness long enough, a few things become apparent.

  1. There are certain tools available, such as canes and dogs and magnifiers and smartphones, that can be helpful and do not have to define you.
  2. The general public has a very black and white view of blindness, and when we’re out in the world, living our lives with whatever tools help us, we are often educating people about the wide spectrum of sight loss.
  3. Sharing stories of vision loss helps connect us and changes stigmas about blindness.
Photo Credit: Morry Angell, Guide Dogs for the Blind

I’d like to say that shame over vision loss is something that you just wake up having conquered one day, but the truth is that it’s a million little baby steps. And on certain days, it still takes work.

I cannot pinpoint one breaking moment or even one particular thing that helped me move forward. It was a series of breaking moments and a series of steps forward. Part of it was having my daughters and wanting them to grow up with a happy mommy; part of it was sharing stories with my twin on our blog; part of it was getting a guide dog.

It was only when I began to lean into that part of myself that I always thought of as flawed that it truly began to lose power over me.

I may not be teaching in a classroom right now, but I am now confident enough that I could go back at any point in the future, For now, I am homeschooling my 2 daughters, who are growing up with a mom who doesn’t let the stigma of blindness stand in her way.

And they don’t seem to care whether I make too much eye contact, or not enough. I hear them tell their friends their mom is “half blind”, and I suppose that is half true.  I am not concerned with correcting them or having the most accurate label to describe me and my vision. My only concern now is living the most authentic life possible and spreading the message that we do not need to be ashamed of blindness.

You can connect with Joy and her twin Jenelle on their social media accounts:

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WOTM 27 Featuring Kimberly White

Introducing the Fabulous Kimberly White

Photo of Kimberly holding her bejeweled White caneMy name is Kimberly White, I am both honored and humbled to participate in raising awareness and helping to change society’s perception of blindness.

I am happily married, living in Portland, OR; my son is a junior at Santa Clara University, majoring in Physics; he too has RP.

I was born, an only child, in Cincinnati and grew up in a NW suburb of Chicago – Schaumburg, Illinois. Following college (The Chicago Art Institute of Design), I moved to San Diego where I embraced successful careers at Nordstrom & Nike. After having our son, I started my own interior design company and now, upon losing my sight, I am a community volunteer and Creator!

RP Simulation Glasses created to help raise awareness
Glasses created to help raise awareness

The greatest job title I’ve EVER held is “MOM” – after my one & only son was born 21 yrs ago, I was diagnosed with a genetic hereditary eye disease: retinitis pigmentosa (RP) – it rendered me night blind, which I had always been but was never aware of because you “don’t know what you don’t know”,  I never saw at night [as I told the Dr., I thought that’s why it was called night – believing that no one saw in  darkness]; I was notorious for sitting on total stranger’s laps in movie theaters and consistently falling off of curbs or tripping over chairs/tables. My overall visual perception can be explained as tunnel vision [close one eye and hold an empty paper towel roll over the open eye – that demonstrates what I see], in addition with RP, we struggle with the early onset of cataracts [smear Vaseline on your glasses for an understanding] and CME, which is inflammation [cysts] of the retina [much like opening your eyes underwater and what you would see].

I drove during the daylight hours not at night. But as my vision has deteriorated, four years ago I was forced to relinquish my drivers license and acclimate to a white cane. This new journey forced me to adapt to many changes in my life; one was giving up my design business and depending on others for ALL transportation needs!

Before and after photo of zebra print hand painted furniture and cork earrings designed with bling
Left to Right | 1) Hand painted furniture. 2) & 3) Cork earrings designed with bling

I am legally blind but I wake up every day with a desire to educate, motivate, &/or inspire, hopefully, one person. I love the beach, walking, socializing, crafting, celebrations and new adventures!

The adversity in life  has given me strength, I possess enormous passion to create a better community & world. My story is one of loss, depression, and isolation – turned hope, support & community. HOPE is something that everyone needs to hear at some point in life.

Collage of Kimberly at the beach (Oregon coast) mugging for the camera. 2) Kimberly & her husband at Cannon Beach, OR and Cork tops created - Kimbely & Sheila Blakeslee [owner of Blakeslee Vineyard]
Left to Right | 1) Oregon coast – Kimberly at the beach mugging for the camera. 2) Kimberly & her husband at Cannon Beach, OR 3) Cork tops created – Kimbely & Sheila Blakeslee [owner of Blakeslee Vineyard]
Throughout my own experience, using a cane, I have been on the receiving end of lack of understanding, support, bullying and inequity. Society has done a terrible job of educating and promoting visual impairment. Many people believe that being blind means the absence of ALL vision, which clearly is not the case. I wear makeup, I have “sassy” hair – by choice, I am a wife, a mother, I have friends and an active social life — I am alive, full of life and unstoppable! I plan, organize & execute events & fundraisers. I create unique items made with corks [living near the wine country in Oregon, it was a natural]: picture frames, wine bottle covers, earrings & apparel. I hand paint furniture and create cards and decor that sparkle! I recently completed my first Acting class and LOVED the experience!

Kimberly with her Acting class!
Kimberly with her Acting class!

Even though I have lost most of my vision, I possess a love [and sincere appreciation for life] … we all have “stuff”, adversity that others aren’t necessarily aware of, but the importance is educating others, in an effort to raise awareness in hopes of bringing kindness and acceptance to those suffering!

I hope & pray through science and medical research and advancements, that one day there will be a cure for RP. But until then, I maintain a commitment to helping others understand visual impairment!

“The eyes are useless when the mind is blind!”

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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.