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RP Diagnosis Develops the WHY & Leads to Entrepreneurship

RP Diagnosis Develops the "Why" featured image description is in the body of the post.

RP Diagnosis Develops the “Why” & Leads to Entrepreneurship

“I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark.” 

~Hannah Steininger

RP (Retinitis Pigmentosa) was the diagnosis. I got into the car at the eye clinic and sat in silence with the devastating news I’d just received. It was a cold, blustery October day in 2008. I even remember how cloudy it was as the trees stood bare. We were parked directly in front of the window of the clinic. My eyes were fixed ahead on people sitting in the waiting room.

“Am I going to go blind?” I asked my mom after what felt like hours.

I felt my face get hot, as the tears welled up in my eyes. Dumbfounded, confused, and scared, I didn’t know what to think. You can never go back once you find out something like that. Immediately I felt so different. Everything started to make sense:

  • how cautious I was at night,
  • why I had always wanted to sleep with the hall light on,
  • why I hated movie theaters.

The list goes on and on. I was glad that it was all making sense, but at the same time, I wished I hadn’t found out.

Up until age 15, I thought everyone saw the way I did. Why think anything else? I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark. 

For about 8 years I decided nothing was wrong with me. I ignored the diagnosis of RP and I refused to take my pills regularly or tell anyone about my vision.

College Changed Things

Once I got to college, I would get into risky situations. Scenarios, like going out and drinking with my friends or walking home in dark, were commonplace. I fell and injured myself too many times to count. Crying
because I couldn’t see on the dance floor like everyone else, I’d leave, alone and in the dark. Why couldn’t I be like everyone else dancing so lighthearted. Going out became so taxing and so painful that I isolated myself my senior year of college.

After I graduated college and moved back to Minneapolis something in me shifted. I was sick and tired of feeling sorry and bad for myself. So much hope I had placed in research and retina specialists. When they told me there was nothing I could do and that my vision was getting worse, I was crushed. I began looking up alternative ways to help heal vision loss. That’s when I found micro-acupuncture.

For the past two years, I have been taking a more holistic approach in the way I manage my RP. I began eating a diet of anti-inflammatory foods, educating myself about how the systems in the body work together, and started going to micro-acupuncture.

As I have been opening up to others about my vision and started to advocate for the modifications I need, I noticed a lack of awareness about vision loss and people who struggle with it. So many people are affected by loss of vision at some point in their lives, why is it not more well-known and talked about in society?

The “Why” Turns Into Entrepreneurship

One year ago, I quit my corporate job and decided to pursue my passion. On February 16th, 2019, I launched Watson & Wilma, a line of ethically made intimates. I designed each piece and enlisted the help of local pattern makers to bring it to life. Each item is made-to-order and sewn in Minneapolis from 70% sustainable and organic fabrics.

Vision loss is an invisible disability but a major part of everyday, as intimates are a similarly hidden but important part of every outfit. A portion of each sale will be donated to the Penny George Foundation, to help provide holistic care and treatments to those with vision loss. My mission is to spread awareness about vision loss and for the visually impaired community. 

As expected, there are still hard days and days that I become discouraged about my vision, but my “why” keeps me going. I am doing my best to turn my pain into empowerment and allowing it to navigate my path instead of fear.

RP Diagnosis Develops the “Why” Featured Image Description:

A scenic outdoor shot of Hannah smiling while standing outside with a mountain range in the background. She is dressed casually in jeans, striped top, with hiking boots and a long warm-looking sweater. Hannah also has a black knitted hat on her head and her long brunette hair is draped over her outfit.

Additional Images:

  • Bamboo Bra: A black bra called Pick Me Up Around 8
  • Models: Two women (one brunette, one blonde) are wearing all of the pieces in Hannah’s current collection. The photo shows them hanging out in a living room. One of the models is sitting on a sofa while the other one is kneeling on the floor looking through music albums.

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Abby’s Reflections #17 | Acclimation To Sight Loss

Description is in the body of the post.

Insights on Beauty & Sight Loss

“The most difficult things about losing my eyesight apart from not being able to see, was the loss of access to information, the lack of general awareness, and the negativity associated with blindness.” ~Abigale

Description: A white, teal, and gray boldblindbeauty.com template utilizing the ‘Abby’s Corner’ image of Abby sitting cross-legged in her PJs (gray bottoms & white top with a gray collar) with a teal Abby logo laptop on her lap. Sporting her signature explosive hairstyle, she is wearing a headset with microphone and her white cane is propped up next to her.

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We Can Change – The Power Of Community

We Can Change – The Power Of Community

“Life has changed me from being fearful and insecure, into now working to help others find themselves and reach for the resources and tools they need to thrive.”

~Carrie Morales

The Struggle of Growing up with a Visual Impairment

1. We Can Change – The Power Of Community image of Carrie and her son description is in the body of the post.
1. Carrie Morales

Growing up being legally blind with Aniridia was an immense challenge. Aniridia is the lack of an iris and the underdevelopment of the eye. In my case, it also comes with glaucoma, cataracts, microcornea, and nystagmus.

I struggled with insecurity, lack of confidence, loneliness, and a general sense of un-belonging. Though surrounded with other family members who were also blind or visually impaired, I felt disjointed from the rest of my peers. As a result, I was never able to fit in despite all my efforts.

I struggled and concealed my depression and hurt with rejection, when people avoided or gossiped about me, and asked things such as “why do your eyes move like that?” or “what’s wrong with her?” Because of microcornea, my eyes appear smaller and nystagmus causes my eyes to constantly and uncontrollably move around.

I wasn’t “normal”.

My defense was to emotionally detach. I was shy and became shyer and there would be days that I didn’t speak to anyone unless forced to by a teacher.

What brought me out into the proverbial light was the help and support I found through community.

Beginning to Find Myself

My TVI (teacher for the visually impaired) told my parents about a summer camp for the blind. That camp literally changed my life as I thought I was alone, the only one struggling, but I wasn’t. It was through that program and others, I met fellow peers who shared my struggles. Attending these programs while in high school and transitioning to college taught me so many things. I learned independence, life skills, assistive technology, social skills, and leadership.

What’s more, I saw other people who were blind and visually impaired being successful. I met and interacted with those who were living their dreams and striving toward their goals. This is what I wanted to do; to be like them, to have confidence and show that I was able. To reach past what society said I could and could not do and surpass even my own expectations.

As a teenager, I stumbled and fell, was reckless, and made bad decisions. But life continued and led me to eventually move with my family to North Carolina. It was here I took a job at a company that hired many blind people.

Starting out in manufacturing, I was promoted to being a receptionist. Eventually, I began working at the low vision center that was part of the company. NC is quite different from New Jersey which is where I mostly grew up. In the northeast, people generally mind their own business and didn’t speak to strangers.

Well, North Carolina is the opposite. People would ask how I was, about my life, what I liked to do —all in the first interaction! Oh my, it was such a culture shock, to say the least. Yet, it pried me out of my shell and changed me.

A Force of Change

I went from being anti-social to not being able to stop talking. Over time, I gained more confidence and learned how to present myself.

I’ve always loved technology and had a thirst for knowledge. Through my time working at the low vision center, I learned so much. I gained experience in:

  • services,
  • resources,
  • government agencies,
  • available technology,
  • and met countless people with differing amounts of vision and needs.
2. Pablo & Carrie image description is in the body of the post.
2. Pablo & Carrie

Along the way, I met my then to be husband, Pablo; we moved in together, got married, had a son. Due to the high costs of childcare and transportation, I decided to stay home with our son. Becoming a stay at home mom allows me the opportunity to invest in him completely as my father did for me.

With Little Pablo being the first child, it was so exciting learning and enjoying him. This new life, a whole bundle of potential is everything to us. We found out that he has aniridia like me. Though it hurts because we all want the best for our children, he’ll be okay. I know that he will grow up with all the resources and support he will need.

As life went on I grew accustomed to the new way of life with a little one. Settling into my routine, I began to have more time. It was in a moment of looking for something to do besides the day-to-day tasks, I had an idea. I decided to start an organization to share what my husband and I have learned and give others encouragement. Afterall, we all have it within us to continue, to move forward, and to reach for our goals.

A New Journey

3. Big Pablo & Little Pablo image description is in the body of the post.
3. Big Pablo & Little Pablo

I grew up visually impaired, but my husband, Pablo, went from fully sighted to totally blind.  None of us have the same exact stories. We have our own journeys, but we still face similar struggles and we can support and help each other.

I began my youtube channel (Live Accessible) and website (http://liveaccessible.com) on November 1, 2018 and am amazed at the growth we have had.

Our mission through our YT channel and website is to share hope, encouragement, community, resources, tips, and technology to help others who are blind, visually impaired, and sighted supporters. Along the way, I’ve made many friendships, met so many amazing people, and have learned so much from my viewers.

I’m grateful for the opportunity to give back to this community. Together, we can make this world into a better place where we can tear down invisible barriers in society and in this world through raising awareness, mutual support, technology, and creativity.

We can all live accessible.

We Can Change – The Power Of Community Featured Image Description:

Outdoor selfie of Carrie Morales smiling. Carrie’s long black hair frames her pretty face. She is wearing a black leather jacket and a black top embellished with silver accents on the neckline.

Additional Images:

  1. An outdoor selfie of Carrie and Little Pablo. Carrie is holding Little Pablo with her right arm and she’s wearing a blue long-sleeved sweater. Little Pablo is wearing a red fleece jacket.
  2. Big Pablo & Carrie share a sweet embrace. They are standing outside and sunbeams are illuminating Carrie’s hair.
  3. Big Pablo is standing on a lawn holding Little Pablo in his arms with his white cane tucked under his right arm. Both are casually dressed and wearing sneakers. Little Pablo has on a red puffer jacket and his dad has on a navy blue jacket.

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Vision Loss With A Vision Gained

Vision Loss With A Vision Gained Featured image description is in the body of the post.

Vision Loss With A Vision Gained

“I experienced repeated hospital visits, 21 spinal taps, two eye surgeries, and one temporary shunt in my head. With my current level of vision I can see hand-motion in my left eye and light in my right eye.” 

~Krystle Allen

Woman On The Move 55 Featuring Krystle Allen

Image 1 description is in the body of the post.
Image 1

I became legally blind 18 years ago to an acquired condition called Pseudotumor Cerebri due to malpractice. Pseudotumor Cerebri is a false brain tumor. It mimics all the symptoms of a brain tumor except for the actual growth of a tumor.

In lieu of a tumor, excessive fluid is produced around the brain, spinal cord, and optic nerves. It manipulates the brain to shift forward placing pressure on the optic nerves. This lead to inflammation of the eyes and nerves rupture as well as dangerous head pressure levels. If left untreated it can lead to total blindness in some cases and brain aneurysm.

My condition is in conjunction with Papilledema which is the rupture of the optic nerves and bilateral optic atrophy. At the start of my vision loss, I did not know how to respond because it was a foreign circumstance to me.

There were repeated hospital visits, 21 spinal taps, two eyes surgeries, and one temporary shunt in my head. I am able to see hand-motion in my left eye and light in my right eye. Out of my peripheral view, I see blurriness, floating red dots, and most objects.

When I developed this condition I was expecting to enter my junior year of high school in Passaic, NJ. I believe there was a different plan in store for my life. What many might view as a set back I now know was a set up for greatness!

Adjustment, Transition, and Adaptation

I was declared legally blind due to my incurable condition and vision restrictions. However, my vision loss was my vision gained to pursue visionary experiences for the rest of my life.

I will not pretend that losing my vision was not difficult and will not be difficult. However, where there are difficulties there is an adjustment, transition, and adaptation.

At the beginning stage of my vision loss, I adjusted to the good and bad one day at a time. Before my vision loss, I had never met a person with a vision impairment. I had no knowledge of the resources and broad community of people who happen to be vision impaired. People such as students, advocates, employees, employers, entrepreneurs, and movers and shakers.

Transition meant taking advantage of every opportunity that came my way to regain and build my independence. Beginning with being proactive in using the services available from training centers for the blind. I re-enrolled in high school and went on to study social science once I entered college. In addition, while pursuing my studies I also worked part-time jobs.

I became a self-advocate due to lack of access to adaptive technology in my learning institutions and my places of employment. My day-to-day challenges inspire my drive to be a better person and leave a lasting impression.

Living Life On My Terms

There are so many stereotypes which challenge my efforts to live life and not just exist. Things like:

  • people approaching me to ask who dresses me,
  • employers doubting my skill sets before experiencing my talents,
  • or even when passersby critique my independence

It’s as if I should always have someone helping me because of my disability. How does the phrase go? “I can show you better than I can tell you.”

My experiences have taken me as far as Tokyo, Japan to advocate for residents with disabilities. For starters, I blaze trails of innovation to share resources and uplift people who I encounter daily. I’m a founder of a non-profit organization Eyes Like Mine Inc. Our mission is to share awareness about the capabilities of individuals with vision loss through:

  • community service initiatives
  • comprehensive empowerment workshops, and
  • innovative social change awareness events

Along with my past and current ambitions, I’m a plus-size model and competed in the 2018 Face of Kurvacious competition in New York. I am the creator of the Ms. Blind Diva Empowerment Pageant on a mission to empower women with vision loss by providing tools to encourage and cultivate their daily life experiences.

“The sky is the limit for me and I do not allow my doubts to be bigger than my dreams. I don’t party in pity; I party in heels. And I am not the blind chick but the original blind diva and Ms. Blind Diva if you’re nasty!” 

~Krystle Allen

Krystle Allen Bio:

Krystle Allen is a Newark, New Jersey native. She is a millennial entrepreneur and non-profiteer. Krystle is no stranger to work that involves community development, social change, and grassroots efforts. Krystle presently serves as an AmeriCorps Vista member with a non-profit organization known as the Jewish Renaissance Medical Center located in Newark and Perth Amboy, New Jersey.

Vision Loss Featured Image Description:

Krystle looks stunning in a royal blue one-shoulder form-fitting dress as she stands to pose with her blinged-out white cane. Shiny crystals adorn the single strap on her right shoulder and she is wearing a pink wrist corsage. Her long dark hair flows gently over her right shoulder.

Image 1:

Headshot of Krystle in a mauve off-shoulder sparkly top. Her dark hair is draped over her left shoulder and she is wearing a gold statement necklace.

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