Tag: visually impaired

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My Journey to Becoming Fully Me Albinism & All

The Journey to Becoming Me featured image is described in the post.

My albinism doesn’t define me, but it sure makes me who I am. It is because of my albinism that I have become an incredible problem-solver and out-of-the-box thinker.

~Antonia Lliteras Espinosa

My Journey to Becoming Fully Me Albinism & All

Baby Antonia
Baby Antonia

I was born with albinism a rare genetic condition, which affects about one in 20,000 individuals in the United States. Albinism is the lack of pigment in hair, skin, and eyes. The type of albinism I have means I have no pigment or melanin in my body. However, there are other types where some melanin is present. Persons with albinism are visually impaired and often fall under the legally blind category. I am legally blind and have been since birth. 

Growing up I was very aware that I was different, even so, I had a happy childhood. My family was incredibly accepting and they were fierce advocates on my behalf. I always had everything I needed in school and my parents pushed me to become my own advocate. Self-advocacy began from a very young age and for that, I am ever so grateful.

I grew up in Spain where most people have brunette or black hair, dark eyes, and olive skin. Standing out from the crowd, I was often teased by my peers because of my appearance. However, since I grew up in a small town, my appearance became normal and my classmates moved on to the next thing.

Belonging to O.N.C.E., Spain’s equivalent to the National Federation for the Blind (NFB), was a great resource for me and my family. I went to summer camp with other visually impaired kids where we participated in sports and other fun activities. They also provided orientation and mobility ( O&M ) training and any other school or in-home support I needed. Since there weren’t any organizations specifically dedicated to persons with albinism in Spain, this was the best option. Through O.N.C.E. I met a handful of kids with albinism and so I knew I wasn’t the only one.

Smoothing The Way By Assimilation

As I got older, I went to college abroad and lost touch with the blind and visually impaired community. It wasn’t a choice, it was just life.

So, during my adult formative years, I didn’t have role models who used any sort of accommodations. Not having anyone to compare notes with; I didn’t miss it, I was getting by. Even though I was legally blind, I was proud of being able to do everything everyone else did. The only accommodation I had were magnifiers to read. I never asked for special treatment in or out of class. Looking back at those years I marvel at how I got myself through graduate school! I accepted my albinism but didn’t accept that my disability might mean I have to do things a little differently.

When I started working I never disclosed my visual impairment. In addition, I worked really hard to minimize what it meant for me on a daily basis. I’m an incredibly organized person who gets anxiety over going to new places. As much as I could, I would map out routes days in advance. Then I’d even go on a test run the day before I had to be there, just to be sure I would find the location. Similarly, networking events were torture. Sure, it’s partly because I am an introvert, but I had a terrible time remembering people’s faces or recognizing them!

Accepting Albinism Through Social Media

A couple of years ago after joining a few albinism groups on Facebook, I became enlightened. A lot of the quirks I thought were part of my personality, I discovered were probably due to my low vision. I found a lot of visually impaired people get anxious when going to new places; many don’t like networking events. And for me, it is no wonder I can’t remember or recognize people—I cannot see them! 

These online communities quickly became a place of solace, soul searching, and self-growth. I began to see very successful professionals use assistive technology. Also, I began to accept my visual impairment as a strength and no longer viewed it as a weakness. My albinism doesn’t define me, but it sure makes me who I am. It is because of my albinism that I have become an incredible problem-solver and out-of-the-box thinker. I tapped into the strength of the kid who was once such a fierce self-advocate. I knew I could become a better worker and person if I accepted doing things a little differently. Sometimes, I may need help but I realized that everybody has shortcomings and that we all need help at times.

Embracing Me Is Okay

When I began using a white cane it was my biggest moment of growth. It was both one of the best and one of the hardest decisions of my life. I was putting my disability on display for everyone to see, I was showing everyone what, for so many years, I considered my biggest weakness. I also questioned whether I truly needed it or not. With a lot of support along the way, I have found my cane to be so wonderful, in more ways than I expected. 

When I received cane training, I spent quite a bit of time with other blind and visually impaired individuals. It was like a huge weight had been lifted off my shoulders! I began thinking about my journey and my struggle to come to terms with my blindness. Part of this process was understanding what it meant for me in my daily life. This is what triggered me to start blogging about being legally blind and still live a fulfilling life.

I want to show that my blindness is not my weakness, but an asset. While I can’t tell younger me what I know now, I hope my words will show other young people it is okay to be blind. It’s okay to talk about their disability and to seek help when they need it. They aren’t weak because of their visual impairment, they are strong in spite of it.

Connecting With Antonia On Social Media:

My Journey To Becoming Fully Me Featured Image Description:

Antonia with her crown of white/blond hair is posing outdoors with her white cane. She is broadly smiling as she poses confidently with her white cane that has a pink handle. Wearing a faux wrap light-colored top with jeans and adorable pointed flats Antonia is a beauty. Her jeans are accented with a pink bouquet of roses on the upper right hip.

Additional Images:

  • Baby Antonia is so adorable sitting on the floor playing with a toy. In this photo, she is dressed in a red top with green trim, white pants, green socks, and dark shoes.
  • Antonia is posing in her cap and gown holding a bouquet of pink roses. She has on sunnies and her white dress with black polka dots can be seen with dressy black flats.
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Marieke Davis | Blind Beauty Issue 43

Marieke Davis Blind Beauty #43 featured image description is in the body of the post.

Marieke Davis | Blind Beauty Issue 43

Marieke (mah REE kah) Davis has a two-fold overriding philosophy that guides her life:

  1. Art should be inclusive, not exclusive, and

  2. Art should have an educational purpose that facilitates human understanding.

In today’s Blind Beauty Issue 43 you will meet Artist, Marieke Davis. Marieke’s passion for changing perceptions shines brightly through her extraordinary artwork.

Sight Stealing Diagnosis

Blind Beauty Issue 43 Image 1 description is in the body of the post
Image 1

Diagnosed with a massive brain tumor (pilocytic astrocytoma) at age ten, Marieke underwent three surgeries and 15 months of chemotherapy in the course of ten years. Although she has been intervention-free since her last surgery in 2011, she is permanently visually impaired with hemianopsia (half her field of vision in both eyes), and so uses a white cane to compensate for her lack of right-side vision.

Her love for creating art and for telling a good story took on a therapeutic objective after her diagnosis, but soon became intertwined with her pursuit of narrative art—art that tells a story. This pursuit was further developed when she enrolled at Arizona State University, (ASU) where she first tried her hand at Pop Art and discovered that the small frames used in comics and graphic series accommodated her visual impairment very well. She graduated from ASU last year, summa cum laude, with her Art major and minors in English Literature, Women’s & Gender Studies, and Creative Writing.

In the Bachelor of Fine Arts (BFA) program, Marieke experimented with various artistic techniques and mediums—emulating classic art masterpieces, such as depicting herself in the manner of Gustav Klimt’s “Portrait of Adele” and imitating Alphonse Mucha’s Art Deco style in her “Women of the Apocalypse” series, dabbling in intermedia, as shown in her objet d’art piece, “Sight of Hand,” in which she ironically decorated her first white cane with plastic “googly eyes” and attached a decorated plaster hand at the end of the cane to illustrate to the fully sighted that the feel of a white cane enhances sight for the visually impaired/blind, and creating unique jewelry—while almost setting her bangs on fire in the process!  

Blind Beauty Issue 43 Image 2 description is in the body of the post
Image 2

Finding Artistic Expression

Ultimately, her artistic exploration led to her most comfortable means of artistic expression in graphic literature and comics. It was while she was teaching herself how to create the Prologue and first chapter for her series, Ember Black, that her ASU Disability Resources liaison revealed to her that her daughter is also a visual artist; however since she is completely blind, she has never been able to see her work. That got Marieke determined to provide an audio companion to her graphic series, in an effort to extend her visual art to the visually impaired. The audio version—complete with voice actors, sound effects, and music—along with the printed graphic version earned her the Audience Choice Award in the First Annual ASU Herberger IDEA Showcase, and she is currently working on Chapter 2 of Ember Black, thanks to a grant from the Arizona Commission on the Arts.

Image 3 Life Is Blurry description is in the body of the post
Image 3 Life Is Blurry

Concurrently, Marieke publishes “Life is Blurry,” an autobiographic, online comic strip created from the perspective of a “visually impaired visual artist”—such as she is—with the purpose of educating the able-bodied world through the most effective means she knows: humor. The strip was inspired by Alison Bechdel’s graphic autobiography, “Fun Home,” and was developed in her Women’s Studies course, “Chronicling Women’s Lives.” Excerpts from the strip earned Marieke a 2017 Kennedy Center for the Performing Arts VSA Emerging Young Artist award, and her entry is currently on a national tour. Eventually, Marieke would like to compile her comics into a complete graphic autobiography, but in the short-term, she hopes to have “Life is Blurry” become a nationally syndicated comic strip. Just as people of color strive for artistic representation, people with disabilities want to be represented in the arts, particularly in popular culture.

Image 4 Life Is Blurry description is in the body of the post
Image 4 Life Is Blurry

Past & Future Panel Presentations

Last year, Marieke presented a discussion panel, “Creating Ember Black,” at the Phoenix ComiCon, and this year she presented a panel, “The Philosophy of Rick & Morty,” and a lecture, “Introducing ‘Life is Blurry’ and Other Comics Created By and About Disabled Artists” at the Phoenix Comic Fest.  She hopes to premiere Chapter 2 of Ember Black next year at the Phoenix Fan Fusion after her grant project is completed in March 2019.

See Marieke’s artistic and literary work on her website, mariekedavis.com, “Life is Blurry” and Ember Black, Vol. I on her Facebook page, Life is Blurry by Marieke Davis, and Ember Black by Marieke Davis.

Blind Beauty Issue 43 Featured Image Description:

The image is a faux fashion magazine cover titled Blind Beauty. Marieke is on the cover looking stunning in her black wrap dress. She has long brown hair cascading over her left shoulder and her bangs frame her pretty face.

Blocks of text superimposed on the photo are: “Bold | She Keeps Pressing Onward,” “Blind | She Has Deeper Insight,” “Beautiful | She Sees To The Heart Of Others”

Additional Images:

  • Image #1: In this photo, Marieke is standing outdoors with her white cane in one hand while she rests her other hand on a wall. She is wearing a dark paisley print dress with a scoop neckline.
  • Image #2: Marieke is standing next to two of her pieces displayed on easels holding her white cane in front of her. Her red dress is sleeveless with a square neckline.
  • Image #3 Life is Blurry comic strip: Two panels, Reality vs. Stereotype, shows how society views blind people. On both panels, a woman is standing at a corner crosswalk with her white cane. In the left panel, she is polished. The right panel shows the same woman as beggar dressed in tattered clothing, with dark glasses, holding a can. Her speech bubble says “Change? Spare some change for a blind beggar?”
  • Image #4 Life is Blurry comic strip: This strip has four panels with two cosplayers talking with one another.
    The conversation:

    • Dracula cosplayer: “Wow! So, you’re blind? Are you supposed to be Daredevil?”
    • Maria: “I’m the Silk Spectre. Y’know… from Watchmen? I’m also not totally blind.”
    • Dracula cosplayer: “Still, shouldn’t you be Daredevil? You’d probably relate to that character better.”
    • Maria: “I like Daredevil, but he’s not exactly realistic… lots of people don’t get that.”
    • Maria: Blind and visually impaired people aren’t super-human. And we don’t need to be super-human to be super. I mean, I’m good at hearing cars, but that’s about it—“
    • Dracula cosplayer: “LIKE DAREDEVIL?!”
    • Maria: “I’M NOT DAREDEVIL!”

Connecting With Marieke Davis On Social Media:

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Victoria Claire | Blind Beauty Issue 36

Victoria Claire | Blind Beauty Issue 36

“I believe that sculpture should be felt. To use one’s sense of touch to appreciate and interpret the work, makes for a much more engaging experience for all.” 

~Victoria Claire
The Guide image description is in the body of the post.
The Guide

Over the past few weeks, we’ve introduced you to artists Jayd Alex and Jade Ramos. Today, it’s our pleasure to introduce you to Professional Sculptor, Victoria Claire.

Victoria who is losing her eyesight to Retinitis Pigmentosa (RP), is an ambassador for RP Fighting Blindness. Her key message—”Disability is not an impairment to creativity”—is clearly seen in her artwork.

The sculptures Victoria creates isn’t her only expertise. As a talented musician, she also enjoys surfing, skateboarding, and inspiring others. Like many of the women featured on Blind Beauty, Victoria connected with us on Instagram.

“Disability is not an Impairment to Creativity”

Next month, Victoria will be speaking at an upcoming conference in London. While at the conference, she will also unveil her new exhibition “Freedom In Acceptance.” If you are on Instagram, check out her exquisite bamboo long cane which is part of the exhibition. While the long cane may look different than the standard white mobility tool its purpose hasn’t changed. Regardless of customization applied, the long cane’s primary function is to detect obstacles in the path of its user.

Victoria’s bamboo long cane is a beautiful work of art. What makes this cane so special are the Chinese symbols for “Freedom In Acceptance” burnt into it. This is a powerful statement that basically says with acceptance comes independence. When we lose our eyesight at times we can feel like we are losing control of our lives. However, we have a choice “Freedom In Acceptance” gives us this choice.

What we love most about Victoria’s work is how the images alone evoke the sense of touch. Her pieces express movement and float like a graceful, elegant, ballerina. The smooth, shiny, rounded edges look soft yet at the same time, the pieces are bold.

The Guardian image description is in the body of the post
The Guardian
Description of Victoria on a skateboard is in the body of the post.

Blind Beauty Issue 36 Featured Image Description:

Blind Beauty is a mock fashion magazine cover. Victoria is on the cover sitting, leaning forward, and looking directly at the camera. Her straight blond hair parted in the middle frames her face.  Wearing minimal makeup she is stunning with pink frosted lip color and intense green eyes. She is wearing a sleeveless black dress with a keyhole neckline.

Additional Image Descriptions:

  • The Guide – A representation of peace, The Guide is a contemporary wooden sculpture of a dove in flight.
  • The Guardian – A wooden sculpture of a vertical wing.
  • Victoria Skateboarding – Victoria is using a skateboard on the pavement. Her long purple cane (aka white cane) is in her left helping her navigate. She’s wearing blue jeans, black sneakers & mitten, white winter jacket and a burgundy knit beanie.

Victoria’s Social Media Platforms:

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Jade Ramos | Blind Beauty Issue 35

Blind Beauty Issue 35 featured image description is in the body of the post.

Jade Ramos | Blind Beauty Issue 35

“Having a great self-confidence day so here’s my new profile pic” ~Jade Ramos

Image #1 Disability related motifs
Image #1 Disability related motifs

The above caption along with her powerful artwork is what captivated me about Jade Ramos. The beauty of her words spoke to the authenticity of her selfie, no air-brushing just a confident young woman.

Jade, who refers to herself as ‘a legally blind one-eyed artist,’ is also an extraordinary activist. I was so moved by several of Jade’s pieces I requested permission to share them here with you today.  Descriptions on each of these pieces are below.

When I asked Jade for a quote to go with this post she chose a favorite from Christopher Reeve. After becoming disabled later in life Christopher had this to say:

“I refuse to allow a disability to determine how I live my life. There is only one way to go in life and that is forward.” ~Christopher Reeve

Jade frequently thinks of this quote when things get tough or she gets bad news related to her eyesight. As a matter of fact, if you look closely at image #2 you’ll see this quote.

“Your words, attitudes, and actions impacts my life more than my disability does.

Image #2 Wheelchair icon description is in the body of the post.
Image #2

“Disability is just another way for a mind and/or body to be.”

Image #3 description is in the body of the post.
Image #3

“Make The American Dream Accessible”

Image #4 description is in the body of the post.
Image #4 Tactile Art

“The Disability Is Not The Problem The Lack of Accessibility Is”

Blind Beauty Issue 35 Featured Image Description:

Featured image is a mock magazine cover titled Blind Beauty. Jade’s cover photo is a black and white selfie of her proudly showing off her clear prosthetic right eye. She is wearing a black jacket over a black v-neck top with several stacked necklaces and has a thin lip ring in the center of her bottom lip.

Jade’s Art Image Descriptions:

  • Image #1 Disability related motifs – Assorted black disability icons on a white background. Explained by Jade: “People with disabilities are rarely seen in a positive light when it comes to representation in the media & in everyday life. So I made them have smiles. The original symbol only shows one type of white cane & one type of wheelchair user so I made new images depicting the actual reality.” While these particular images represent visual impairments, Jade will be including other disabilities as she expands.
  • Image #2 A big wheelchair icon is front and center along with quoted text including the Christopher Reeve quote. The text and several smaller icons are interspersed throughout the piece, some are black and some gray. The quotes are included in this post.
  • Image #3 This is a photo of several pieces including the disability icons and abstract art. What caught my attention are the number of statements (some quoted throughout this post).
  • Image #4 This tactile piece is the first time Jade has incorporated braille into her work. It reads “Disability! The one minority group everyone can join. Accessibility matters!”

You can connect with Jade on the following: