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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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New Life Without Limits Blind Aerial Artist

New Life Without Limits Ben Nevis image description is in the body of the post.

New Life Without Limits Blind Aerial Artist

Today’s Woman on the Move, Rachael Storey, is a woman I greatly admire. She’s fierce, tenacious, and totally bad@$$! In “New Life Without Limits Blind Aerial Artist” Rachael shares her journey to acquiring her talent.

Pole performance is something people automatically thought I couldn’t do but I’m actually quite good at it. It’s this feeling that drives me to try a lot of new things in my life.  

~ Rachael Storey

Aerial Arts & Blindness

New Life Without Limits Pole Dancing image description is in the body of the post.
Pole Dancing

Pole had always intrigued me from the moment I discovered it. I love trying and learning new things, and wondered why Pole was seen as such a risky, kinda “trashy” activity. To me it seemed simple and fun, and what’s wrong with trash? The fact that I can’t see made me want to try it all the more. Pole performance is something people automatically thought I couldn’t do but I’m actually quite good at it. It’s this feeling that drives me to try a lot of new things in my life.  

I contacted a few studios but was unsure whether or not I should mention my visual impairment initially. While I was sick of having to hide it I thought it was best to soften the blow. Saying I had more sight then I actually did was a little twisted I know, but it worked. 

Not being allowed to do something because the lack of sight puts people off causes me massive anxiety. So saying I had more sight than I do provides me with personal protection and confidence. Making the initial hurdle smaller at the outset also provided the instructor with more confidence in me. 

Sadly it was always easier for people to make judgments on my capabilities by seeing me in person which sucks. Contacting people by email I could write what I want but they imagine this hypothetical blind person in their head. It’s unfortunate that this generic illusion of what blindness is creates unrealistic expectations or lack of.

Finding Acceptance

New Life Without Limits Ben Nevis Summit Pole Dance image is described in the post.
Ben Nevis Summit Pole Dance

Some studios replied, saying they didn’t have the resources or training to facilitate my ‘needs.’, Others just didn’t bother replying. Luckily I emailed Tempest Dance Studio and because of past experiences, I was careful with my wording. Admittedly this is how most blind and partially sighted people, and those with other disabilities have to approach these situations. 

Originally I asked Mandy if it was possible to try a one-to-one class with my disability. Honestly, her reply meant everything to me. I think she said something along the lines of “you can always just come in and try and see how it goes.” Until you experience pushbacks because of your disabilities you aren’t able to understand how important that sentence was to me.  

In my first class, we were unsure of each other and how I’d learn the technical aspects of pole performance. Things like how fast I’d be able to learn the movements, and how Mandy should execute her teaching methods. We started off small working each other out, testing abilities, strengths, speeds of teaching and learning movements. 

I felt comfortable. Comfortable enough to go back and increase that confidence with my instructor, just as I suspect she did as well. As a worrier, I thought Mandy might have seen how rubbish I was and decided it was too risky to take me on as a student. So I was shocked when she asked if she could proudly post our first day of progress on her business page! I was so happy that she’d taken the chance, adapt her teaching and wanted to share that with everyone else. 

Sharing The Journey To Benefit Others

Our confidence grew as teacher and student and we shared our progress with the rest of Team Tempest. I wondered why this couldn’t happen for other instructors and students. Why was I full of anxiety when I first began my journey into learning pole performing? I could use what Mandy and I had experienced and put it to good use. Together we broke down barriers and were the perfect example of unlimited expectation. Going forward I wanted our experience to set the precedent for anyone else as curious and as adventurous as myself. Don’t Look Down was created because of my journey.

Pole and aerial is my safe haven! I don’t have to lie about who I am and it’s made me socially and body confident. Confidence in these two areas I never thought I would ever truly achieve. Pole gives me the opportunity, confidence and the space to explore what I can do. Pushing my body to the limits, creatively performing and creating characters for routines. 

For me, Pole has filled an emptiness created by blindness. I don’t get hung up on not being able to see myself in the mirror because I can move and feel my body. Rather than being bothered about my body’s superficial appearance.        

New Life Without Limits Blind Aerial Artist Featured Image Description:

A powerful shot was taken by Paul Miller during Rachael & team’s descent of Ben Nevis in April of this year. 
The photo captures the difficulty of the path, how the basic sighted guide works, and their communication while navigating. In Rachael’s words: “This is just one of the hundreds of photo’s and clips by Paul that expresses the normality of living with sight loss. It’s not overly exaggerated or fake, it’s a realistic view of invisible disability and we’re excited to include it in the gallery of our project.

Additional Images:

  • In this photo, Rachael is Pole Dancing. She is in an upside-down position and the strength it takes to hold herself is clearly demonstrated here.
  • Photo described by Rachael: “Despite the dreadful weather, I made it to the summit of Ben Nevis on Saturday! It was wet, we had no grip and we were in full kit but we managed to pole dance in the whiteout like pure machines. I couldn’t have made it to the top without the outstanding support, patience & understanding of the entire team who were with me all the way & back.”
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Mainstream Assimilation In Education Lights the Way

Mainstream Assimilation In Education Featured Image Description is in the body of the post.

Doreen never lets the perception of others prevent her from living a rich, fulfilling, and productive life.

~Bold Blind Beauty

Mainstream Assimilation In Education Lights the Way

Mainstream Assimilation in Education image description: Colored alphabet braille blocks used for learning braille.
Colored Alphabet Braille-Blocks

One of the best things about advocacy is highlighting the work of fellow blind and visually impaired (B&VI) persons. This work is critical in the mainstream representation of B&VI persons.

Sharing stories through Women On The Move, Blind Beauty, and Cane Enabled shifts the focus from disability to ability. Mass media portrayal of blind people performing extraordinary accomplishments are remarkable, yet we cannot dismiss the importance of advocacy. Advocacy with more representation of B&VI people will promote opportunities and light the way for others.

Recently, a good friend of mine introduced me to Doreen Lundgren – an advocate and Woman On The Move. Doreen, a newly elected President of ACBW (American Council of the Blind – Wisconsin), is a Milwaukee-based adaptive technology specialist. As a multi-talented, person, she is an educator, singer, and certified expert in Unified English Braille Code or UEB. Also a voice-over artist, Doreen creates live sound effects with her voice.

The Introduction

Three qualities I noticed on my initial call with Doreen was her wicked sense of humor, candidness, and sense of adventure. At four years of age, she developed a love for downhill skiing which she continued into her adulthood. In answering my question what was the most daring thing she’d ever done? – skydiving topped the list.

Doreen was born totally blind to parents who are blind. She is one of four siblings. People are amazed at how well Doreen functions in a sighted world, not realizing for her, blindness is her normal. What makes her outstanding is her natural singing talent, intelligence, and her wide variety of interests. The most unique one was learning that she’s an old-time radio enthusiast. She listens passionately to “ Old Time Radio Drama ” on Wisconsin Public Radio, “The WGN Radio Theater,” and “When Radio Was” on WBBM, both out of Chicago. Recently she attended an old-time radio conference in Chicago.

Teachers engage attentively with presenters Carla & Doreen Lundgren in early literacy methods class
Teachers engage attentively with presenters in an early literacy methods class

Advocacy Blossoms From Thirst For Knowledge

Doreen, who attended Pius XI Catholic High School, advocates for the assimilation of B&VI persons into mainstream education. Her passion for history, math, and English evolved at Pius, which led to her interest in the theater and music worlds.

Possessing a wide vocal range, Doreen is a talented singer. She performs as a soprano and an alto in a variety of a cappella, choral, classical, and popular music ensembles. And, if you need to know anything about the 80’s rock band, Queen, she is an authentic ‘Queeniac’ and the unofficial world authority on everything Queen!

Doreen studied computer technology at Milwaukee Area Technical College (MATC) where she became a skilled computer professional with a particular focus on assistive technology. A sports fanatic, her active participation in cheerleading, swimming, baseball, and basketball, developed her enthusiastic love for, and encyclopedic knowledge of professional sports.

Sharing Her Voice With Bold Blind Beauty

Since Doreen is a voice-over artist, we thought it would be cool for her to breathe life into Abby. Abby aka Abigale is our bold and stylish fashion icon who always walks in confidence with her white cane.

Meeting Doreen couldn’t come at a better time. We’re working on multiple projects and refining our focus to better support our mission. The prospect of hearing the voice of Abby doing product reviews and sharing beauty fashion and style tips is exciting.

Doreen never lets the perception of others prevent her from living a rich, fulfilling, and productive life. I can’t think of a better person who epitomizes Abby!

Mainstream Assimilation In Education Featured Image Description:

A photo of Doreen Lundgren (seated at a table) one of the featured speakers at Alverno College, in Milwaukee. Her presentation was about literacy learning from the perspective of being blind.

Additional Images:

  • Colored alphabet braille blocks used for learning braille.
  • A photo showing the teachers engaged attentively with presenters in an early literacy methods class at Alverno College.
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Sight Loss Story Is More Than Meets The Eye

Sight Loss Story More Than Meets The Eye featured image description is in the body of the post.

When I succeed, I am proud of myself but don’t take it as a blind girl win. When I fail, I forgive myself and think of an alternative way to succeed.

~Jenna Faris

Sight Loss Story Is More Than Meets The Eye

My sight loss story has no true beginning or end as I was diagnosed with congenital blindness at four weeks old. For reasons unknown to anyone, my limited vision declined steadily throughout my life. Blurry shapes and contrasts I could make out at five years old are now mere memories. Perhaps what little I can see today will one day be a memory, as well.

Not much is known about my family’s rare hereditary condition. It doesn’t have a name, and there is no cure for it.
With half of us blind, and the other half sighted, my family is split down the middle.

Since I was legally blind at birth, I never went through that difficult transition period of growing accustomed to sight loss. But, that is not to say my journey has been without challenges. Instead of facing the realities of vision loss, I had to face my sighted peers’ perception of blindness. I was raised in a family where blindness was simply viewed as a personal characteristic, like hair color or favorite food. It was a shock to find that the majority of the world viewed blindness differently. Many see it as a great limitation, a heavy, shameful burden, and an insurmountable barrier that would affect every aspect of my life.

More Than My Disability

Throughout my teenage years, I struggled to prove that I was just as good, worthy, and capable as my sighted friends and siblings. I battled bullying, an eating disorder, and blind brothers who were arguably better at being blind than me. Failure, I felt would prove everyone right, and success would prove everyone wrong. So I went out of my way to oppose stereotypes because I hated being known as the blind girl. It was important for me to break the mold and to stand out for anything other than my lack of sight. Making a point of wearing makeup, and refusing to wear sunglasses. I made a point of wearing makeup, absolutely refused to wear sunglasses, and I threw myself into my education. My urgent approach to my studies could only be described as obsessive because I wanted to be known as the:

  • A+ student
  • Starbucks-obsessed-freshman
  • chick in the blue shirt

Any title would do, as long as it did not center around my disability.

I can’t recall freedom from the gut-wrenching feeling of failure when someone referred to me as the blind girl. Maybe it faded around the time I connected with cool blind people my age. All I know is, one day the words didn’t make me feel bad anymore. I am a blind girl however I am not ‘the blind girl,’ but maybe to them, I am. The phrase no longer makes me feel less than what I am, it merely reminds someone of who I am. While I know my blindness doesn’t wholly define me, if this characteristic stands out to most people, that’s fine. I know I am more than my disability, and if they get to know me, they will too.

Empowerment Gained Through Acceptance

Today I refuse to wear sunglasses not to prove a point, but because they limit my vision and light perception. I now wear makeup when I feel like it, because it makes me feel good inside. And I achieve in school because I know this will further my career. When I succeed, I am proud of myself but don’t take it as a blind girl win. When I fail, I forgive myself and think of an alternative way to succeed.

I recently graduated with a bachelor of science in food, nutrition, and health from the University of British Columbia. This summer I’m working part-time as a server while scoping out further career options and working on my book series. I’m just your average twenty-something dreamer with a whole life of possibility ahead.

My sight loss journey may never truly be over, but I’m okay with that. I hope it continues to help me become the human I want to be.

Connect with Jenna:

Sight Loss Story Is More Than Meets The Eye Featured Image Description:

Jenna stands at the back of a cruise ship. She wears a deep blue shirt that matches the ocean and sky behind her. Her dark brown hair streams down her back as she smiles serenely at the camera.