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Sports: A Vehicle to Disability Advocacy

Introduction

Last week I introduced you to Blind Beauty Eliana Mason. Today, in her Women On the Move article, you’ll learn more about how she became a fierce sports competitor. A Disability Advocate in the making, I can see Eliana changing perceptions about visual impairment through her love of sports.

It’s not easy living “in-between” (not fully sighted, not fully blind). Like a vast number of conditions, visual impairment/blindness is a spectrum. None of us “see” the same, even those who have the exact same condition. We all “see” differently and whatever residual sight we possess impacts day to day living.

Visual Impairment & The Public

Peru 2019 Calahan & Eliana
Peru 2019 Calahan & Eliana

When I was born the doctors thought I was completely blind. I have underdeveloped eyes along with congenital glaucoma and cataracts. At just 9 days old I underwent surgery to remove my lenses. However, because my eyes were not fully developed the doctors were unable to complete the procedure, and my lenses were not replaced. This resulted in me having very limited vision in my right eye and only light perception in the left.

People always ask me “what can you see?” I find this difficult to answer because I was born with my eyes this way. All I can see is all I have ever known, therefore it makes comparison almost impossible. One big frustration I have is that most people don’t realize what it means to be visually impaired. Our brain wants to quickly categorize things and so others typically either think you are sighted or blind.

Visual impairment is a concept that confuses a lot of people and I have been accused of “faking” my disability. Who would even want to do that?

I get anxious using my cane because people have said to me “you are looking at your phone, why are you using that cane?” What they don’t understand is my font is HUGE, I have my screen zoomed and I am holding my phone right in front of my face. I want there to be more education on what it means to be visually impaired, and that no two individuals’ eye conditions are the same.

I want to feel confident and empowered using my cane, a tool meant to help me. However, often I am nervous due to the stigma and reactions by other individuals. It is my goal to be a disability advocate and change the way disabilities and especially blindness is viewed.

Natural Born Competitor

Team USA Red Carpet 2016
Team USA Red Carpet 2016

I grew up as the middle child between two brothers. Thus, it was my mission in life to keep up with them in every way possible. They are to blame for my competitive, stubborn, determined, and assertive nature. You really have to be tough growing up with only brothers. I would get frustrated when I couldn’t keep up with them athletically due to my vision.

Growing up I led a very active lifestyle; I loved hiking, camping, skiing, and of course playing sports. I tried a variety of sports, including cheerleading, track, gymnastics, and soccer. While I loved them all my vision became a barrier to my overall success.

At 15 I was so excited to discover goalball, a sport I could excel in without having to compensate for my vision loss. It was the first time in my life that I felt like I could be an athlete first. I was able to focus solely on the sport, without making adaptations or accommodations for my visual impairment.

You may be wondering what goalball is? It is a Paralympic sport geared specifically for blind and visually impaired athletes. It was developed in WWII for blinded vets and is now played internationally around the world in over 200 countries. I highly suggest looking it up. I joke that it is a sport for blind individuals, however, the easiest way to understand it, is to watch a game. Goalball is unlike any sport you have ever heard of and has changed my life.

Taking Love Of Sports To A Higher Level

Lima 2019 Throwing Photo is described in the body of the post.
Lima 2019 Throwing Photo

Through sports, I have really developed a stronger sense of self. Competing with other athletes who share my visual limitations helps me see them as role models, not only in sports but in life. I felt like I was part of a community bigger than myself and it really improved my overall confidence and identity.

Sports have shaped me into the person I am today. Through playing a competitive team sport, I appreciate the hard work, dedication, failure, loss, success, perseverance, and extreme joy that comes with the game. These are skills I can take off the court and implement throughout the course of my life. I would be lost without the opportunity to compete in sports and am so thankful I found goalball.

At first, I enjoyed goalball because it was something new, accessible, and sports-related. However, something changed for me after competing for a year and I realized I wanted to try and make the Paralympic team. I knew this would take a lot of drive, determination, and sacrifice which I was ready to give. I made the 2016 Rio Paralympic team and helped Team USA win a bronze medal in the sport of goalball. While this was amazing I am hungry for more and am training fulltime to compete in the Tokyo 2020 Paralympics with the overall goal of winning a gold medal. Training involves strength and conditioning, on the court practice, and nutrition.

Rio 2016 medal photo
Rio 2016 medal photo

Athlete Becomes World Traveler

Goalball has expanded my world, opportunities, experiences, confidence, and ability to navigate the world as a blind individual. I first started the game at 15 and am now 24. During this period of time I have been to:

Additionally, I’ve met other Olympic and Paralympic athletes, and had the privilege and opportunity to represent the USA on a world stage in the sport I love. I am currently living in Fort Wayne Indiana to train fulltime for goalball. We have our resident training center out here where we conduct on and off the court training five days a week. Having the opportunity to train with my team daily has exponentially increased our team’s skill and ability. I am so thankful to the City of Fort Wayne and Turnstone Center for Adults and Children with Disabilities for providing us with this experience.

It has been worth it to make the move in my life, however, it was honestly really scary to do so. Moving across the country away from my friends and family to an unfamiliar location was a very hard decision. I have grown a lot from this experience in my independence and have learned a lot about myself.

My boyfriend competes on the USA Men’s Goalball team. We are blessed that we get the opportunity to travel the world together and cheer one another on. Dating someone who shares my disability has taught me to be creative in how I do a lot of things. However, it has been really empowering to navigate the world together and teach others that we can accomplish anything we put our minds to.

Furthermore, I am a graduate student at Antioch University, aiming to achieve a Master’s in clinical mental health counseling. It is a passion of mine to work with children and families and I would ultimately love to specialize in disability counseling. I want to ensure that all families understand disabilities and know how to foster growth and independence in their children. A quote I really like (not sure where it comes from, I saw it written somewhere online) is “disability does not mean inability” this is how I live my life, and this is the message I am hoping to impart on the rest of society.

Lima 2019 medal photo
Lima 2019 medal photo

Image Descriptions:

  • Featured image – an action shot of Eliana playing goalball at the Para Pan American Games in Lima 2019. In this photo, she is on the ground blocking a goal shot from the opposing team.
  • Peru 2019 Calahan & Eliana – Lovely capture of Eliana’s boyfriend, Calahan (his right arm wrapped around Eliana), while standing in the arena in Lima 2019. Both are grinning as they are about to bite into their silver medals.
  • Team USA red carpet banquet in DC after the 2016 Rio games. Eliana is standing on the carpet wearing a red dress and gold sandals. Eliana has honey blonde hair just below her shoulders. She is wearing a bronze medal around her neck and behind her is a dark gray backdrop with the Team USA logo and logos of company sponsors.  
  • Another action shot of Eliana from the Para Pan American Games in Lima 2019.
  • A team photo on the medal stand from Rio 2016.
  • Another team photo on the medal stand from Peru 2019.
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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: