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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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Makeup Never Leave Home Without It

Makeup Never Leave Home Without It image is assorted makeup products

Makeup Never Leave Home Without It

“The only way I’d be caught without makeup is if my radio fell in the bathtub while I was taking a bath and electrocuted me and I was in between makeup at home. I hope my husband would slap a little lipstick on me before he took me to the morgue.” ~Dolly Parton

Barefaced Naked

maybelline-eye-and-brow-pencil
Maybelline eye & brow pencil

Dolly’s quote sounds laughingly vain and I can so relate. Back in the day, I used to wear a boatload of makeup. Today, depending on the season, I wear considerably less and feel liberated nixing what I feel are non-essentials.

Just like American Express “Never leave home without it” was my makeup. I wouldn’t dream of going outside without my ‘face.’ My reasoning was I felt to do otherwise would be a great disservice to humanity. In other words, I didn’t want to scare people.

I may be overly dramatic but there a time or two where I’d risk death versus being seen barefaced. One time, a few years back, my ex-husband and I were in the ‘non-speaking terms’ zone. So later in the day when I thought I was having a heart attack, I had 3 problems:

  1. I had to be sure it was a heart attack otherwise I’d have an emergency room visit co-pay
  2. I needed to make myself presentable which included a shower, makeup, and proper emergency room attire
  3. Since my ex and I weren’t talking, I would need to drive myself to the hospital

The Wait And See Approach

If you think I did the responsible thing by pushing my pride aside and asking my husband to take me to the hospital you would be mistaken. I did the exact opposite by choosing the ‘wait and see’ approach. I took a shower, put on my makeup, did my hair, and got dressed. All these things I did while hoping the pain would subside, it didn’t.

Then with car keys in hand, I tried to sneak out of the house. The problem with this plan was I had to go past my ex to get to the door. So when he asked me where I was going I told him “to the ER” and kept on rolling.

Astute observer he was, he said, “Steph, you can’t even see to drive.” My response—“watch me.”

Okay, okay granted I sounded childish but I was not going to admit he was right. The end result—took me to the ER.

Long story short, these are the depths I would go to avoid being seen in public without makeup. By merit of me writing this you know by now that the outcome of this particular story was good.

Being comfortable in my skin

maybelline master drama eyeliner
Maybelline Master Drama Eyeliner

Today, I feel at ease walking my dog, going to the store, and all sorts of places without makeup. Once I started taking myself a little less seriously my attitude changed towards a number of things in my life. I actually enjoy wearing it now that it doesn’t feel like such a ritualistic process.

I can’t tell you how good it feels to do so much more with less. Now when I wear makeup I use at most 5 products. Out of the five items, I would consider my essentials to be the eyebrow color and eyeliner pencil.

You know yourself better than anyone else. Even if you are totally blind, with practice you can determine the best way of using makeup. It may take some trial and error but with plenty of patience, it can be done.

Going forward, I’ll talk about makeup for blind and visually impaired people and share techniques that work for me. In the meantime, check out Vision Aware Makeup Application After Vision Loss for very useful information on this topic.

“I think women should wear whatever makeup they want for themselves. Makeup should be fun.” ~Emma Stone

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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.

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WOTM 3 | Featuring Susan and Sherri Rodgers

WOTM 3 Featured Image description is in the body of the post.

WOTM 3 Featuring Susan & Sherri Rodgers

“I was born profoundly deaf with a double hare lip & cleft palate. When I was 3 years old, I attended DePaul Institute where I learned how to talk & lip-read.” ~Susan Rodgers

Women On The Move x2

For as far back as I can remember I have always been fascinated by identical twins. I imagined it would be so cool to trick parents, teachers, and friends with shenanigans by trading places. Throughout my life, I’ve befriended several sets of twins and I also appreciated the differences among each set. Enter Susan and Sherri Rodgers two of the most remarkably fierce ladies I’ve had the pleasure to call my friends.

When facing a new situation do you ever get that stomach-churning feeling that triggers the flight or fight response? That’s how I felt in 2011 when I attended my first local Council of the Blind meeting here in Pittsburgh. I wasn’t sure what to expect and thought maybe this wasn’t one of my best ideas. Even so, I ventured forward into the unknown. Of course, my fears were unfounded and I was thrilled to meet the remarkable Rodger sisters.

Susan and Sherri both have a hereditary condition known as Usher Syndrome. Usher syndrome is a double whammy and is described as “the most common condition that affects both hearing and vision.”One would think a person who is sight and hearing impaired would have great difficulty navigating in a sighted world. However, after meeting Susan and Sherri, both of whom are very active members of the community, one’s thinking would change.

“I’ve been a member of the Western PA Association for the Deaf/Blind (WPADB) for at least 15 years, being a part of the group I knew a few people but had to talk to them through an Interpreter. If you’ve never had this experience it can be quite challenging.” ~Sherri Rodgers

Being visually impaired myself, one of the main issues associated with sight loss is the general lack of access to information. With the advances in technology, access to information has greatly improved but there is still room for improvement. Take for example Sherri’s experience of talking through an interpreter to some of her deaf/blind friends. Or Susan at 3 years of age learning to talk and lip-read; these services and skills are critical to communication.

If not for social services, assistive technology, and mobility devices, people who are blind, deaf or deaf/blind would live life in a vacuum. For example, when a sighted person is suddenly unable to see faces or interpret body language, this becomes a barrier. Without the visual cues of body language, this can hamper how we communicate with one another. So imagine what it must be like for a person lacking two of their major senses. The idea here is not to invoke pity but awareness.

Susan and Sherri did not let Usher Syndrome stop them from living a fulfilled life. Both of them got an education, work, and actively advocate on behalf of blind, visually impaired and, deaf/blind people. They are extremely computer savvy supporters of the disability community.

Susan and Sherri’s Community Activities

The sisters serve in different capacities in the above organizations and if that weren’t enough, each of them, are employed. Susan and Sherri, are powerhouses who work to eliminate obstacles in their day-to-day living.

This post is not intended to minimize the challenges Susan and Sherri face in their lives. Rather it is to honor them as fierce bold blind beauties. I cannot imagine what it would be like to walk a day in the sister’s shoes. However, I can tell you that to walk along-side them is, in a word, amazing!

WOTM 3 Featured Image Description:

Sherri Rodgers & Friend Bill Newland

1 For additional information on Usher Syndrome visit www.ushersyndrome.nih.gov