“When we are out here living our lives, we are bold. We are embracing our blindness. We are blind and we’re beautiful.”
Last year was tough. My best friend was diagnosed with cancer, another very good friend died unexpectedly, and I had to deal with some significantly unresolved fears. Yet among these struggles, there were always glimmers of light; standing up for my friend, continuing the work my other friend believed in so deeply, and coming to terms with myself.
One of the best gifts I received last year was a connection with Tony Koros at Grotto Network and the opportunity to share part of my story. Here is the video he created along with the transcript (below). Thank you, Tony, for spending my birthday with me and working with me to film this footage. And thank you Grotto Network for making this possible!💛
Stephanae: Beauty is seldom associated with blindness. Beauty is seldom associated with disabilities, or people with disabilities. I wanted to change that.
I was looking in the mirror and I took out my right contact lens. I’m looking up in the mirror and all of a sudden, because I still had my left contact lens in, my face was gone. There was just no face. I’m like, “Whoa.” My whole feeling about the process of going blind was: If I’m going to lose my sight, I’m going to do it my way.
We can do anything that we want to do, provided we’re given the tools to do it or we learn a different way of doing it.
Stephanae created a blog called “Bold Blind Beauty.” The blog celebrates blind and visually impaired people, and shares Stephanae’s tips on makeup, style, and beauty.
(Applying makeup in a mirror)
Most of the time I’m not even in a mirror when I’m doing this, but old habits die hard. Even when you can’t see, when you can no longer see, you still want to use a mirror sometimes. At least I do.
For me, becoming embarrassed by other people standing around watching me is huge. When I’m in an unfamiliar area, sometimes, even though I’ve been using a cane now for years and I feel like I’ve built up my confidence and I feel like I’ve got this thing down, I sometimes get so overwhelmingly afraid that I panic.
We need to change the way we look at people with disabilities. The way we’re doing it now, we’re looking at the tools that they use to become independent, but we’re seeing them as a crutch, as opposed to a tool of independence.
I created Bold Blind Beauty so that we could change the perception of how we view people, period. I just would like to see us be a more inclusive world for everyone and accept people as we really are, stripping away the outside and getting to the heart of who we are as people.
But when we are out there and we are living our lives, we are bold. We are embracing our blindness. We are blind and we’re beautiful. We’re beautiful because we’re out here doing that, living our lives.
Advocacy is in my blood and fuels my spirit. So when my friend Donna Hill sent me an email asking for help to win a book cover competition I said YES! Since I’m always looking for opportunities to increase accessibility, inclusion, and representation this opportunity is a fun way to do this. Please join me in voting for Donna’s book cover HERE. Together let’s change how we perceive one another. Without further ado, it’s my pleasure to present Donna:
Now in Final Round of Book Cover Competition: Vote it into the Winners’ Circle!
I entered, and Jaws said, “1 Vote Button.” Since that first day, I’ve been working my butt off, following every lead and using social media in ways I would have never dreamed of only a month ago. Through blog posts, status updates, newsletters, emails to individuals, posts to my many Facebook and LinkedIn groups and requests to authors on the AllAuthor site, I’ve been doing everything I can to get the vote out.
Some of the procedures are complicated, but I’m doing them so much that it’s like my hands are dancing around the keyboard. I’m happy to announce that The Heart of Applebutter Hill is now in the fourth and final round! I’m using the opportunity to raise awareness about blindness, guide dogs and accessibility, & I would appreciate your help. If I’ve already convinced you, just go vote: https://allauthor.com/cover-of-the-month/5725/
Description of the Book Cover of The Heart of Applebutter Hill
The cover of The Heart of Applebutter Hill shows a cave scene – stalactites reflected in an underground lake. In the bottom right, a hand holds the blue, heart-shaped Heartstone of Arden-Goth. Photos by Rich Hill; cover design by Bob Lizza, Lizza Studios.
The idea for the book cover, however, came from yours truly. I have a beautiful blue glass, heart-shaped paperweight, which was given to me by my “secret sister” when I belonged to a women’s circle at St. Paul’s Lutheran Church in Glenside, Pennsylvania. The cave scene is a bit of a secret. I would like to find out if anyone recognizes it. I will say that my hubby Rich and I have been there twice, and without seeing it in the ordinary sense of the term, that cave formation dug a hole right into my imagination and provided one of the novel’s most exciting, scary and intriguing scenes.
Some Thoughts on the Big Picture
Pink breast-cancer-awareness afghan, designed and knit by Donna W. Hill, features twining vine surrounded by butterflies and candle flames with “Buddy Check” in Braille: photo by Rich Hill.
Why is this so important to me? It’s October which makes it “Breast Cancer Awareness Month,” and a celebration for me of twenty-nine years as a breast cancer survivor. I am aware that life is short and that there is a reason each of us is here, a unique perspective on the human condition we hold in our hearts and share as a gift to Life.
It’s also “Meet the Blind Month.” I was born legally blind from Retinitis Pigmentosa, a degenerative condition, and I feel an obligation to smooth the trail a bit for the next generation. People with vision loss are still dealing with the devastating impact of misguided, erroneous and cruel prejudices and low expectations about our potentials. These prejudices are held by people who have limited imaginations when it comes to their own impressions of what it must be like to not have eyesight.
Sighted Folks Need Our Help
The sighted world needs to learn about and embrace us for at least two reasons. First, many of us have developed survival, coping and innovation skills that are far less common in the general public. We know how to press on. We don’t have the luxury of giving up after a few tries. We endure humiliation and find ways of coping with it.
It was the news about how average Americans were reacting to the Great Recession that enlightened me. So many people have no clue how to deal with adversity. They’re devastated after applying for and not getting ten jobs. They are thunder-struck when their “friends” don’t want anything to do with them after they’ve lost their homes or jobs. The socioeconomic structure in which they place their trust is a mirage, and when they finally figure that out, they don’t know how to continue. It’s sad.
Secondly, there are people out there, from children to senior citizens, who are unknowingly living as temporarily sighted people. Most of the people in the world who are now blind lost their sight as adults. They grew up as sighted kids, soaking up the negative stereotypes about blindness, until they found themselves having to give up on life or transform their thinking about what it means to be blind. Too many give up.
Social Change Through Literature
Blooming red Amaryllis with a print copy of The Heart of Applebutter Hill, a fantasy featuring some awesome flowers: photo by Rich Hill.
Blind people come from every race, religion, ethnic, social, age and economic group. From genius to developmentally challenged, straight to gay, we are a cross-section of humanity. To open the minds of the next generation, we need to get our young adult novels & autobiographies into the classroom, where books can open young minds about the abilities and common humanity of visually impaired people.
I have been working on this issue all my adult life, using music, classroom visits, school assemblies and now literature. The prejudices – yeah, there’s that word again – are deeply entrenched in the human mindset. Whether due to unfamiliarity or something else, these roots need some serious tugging at to break free.
Yes, we can open minds about blindness through literature. A book can give sighted people a safe place to get to know a blind person. It’s also important that young blind people get to see themselves in an exciting adventure fantasy. I believe it can help bridge the gap between the sighted public and the blind community and help kids who are losing their sight realize they are not alone.
Blind Authors & the Publishing Industry: a Locked Door
The publishing industry, while occasionally willing to take on the nonfiction stories of blind people who make it into the public arena, has been more reluctant to embrace fictional portrayals of blind people by blind authors. The disability community has a saying, “Nothing about us without us.” So far, however, the industry is more open to fictional portrayals of blind people by sighted authors.
Some blind writers have been told that their portrayals of blind girls and women are “unrealistic.” Others were told that the public wants their fictional blind females to be demure, spiritual and in need of rescue. Despite the obstacles, more excellent blind authors than ever are establishing themselves as career authors.
Fiction by blind authors, however, is not on the bestseller’s lists. Several years ago, I ran across a report by the diversity watchdog group “Diversity in YA.” They track the Publishers Weekly bestsellers for young adult novels with main characters and authors with minority status, including disabilities. In 2013, there were no blind main characters. There were also no black main characters. Only the gay community even came close to having a percentage of books in line with population.
“The one thing you have that nobody else has is you. Your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can. The moment that you feel that just possibly you are walking down the street naked…that’s the moment you may be starting to get it right.”
Advocacy can occur on many levels from creating a massive movement to a simple blog but it all begins with a passion for positive social change. When I was asked to participate in an upcoming event to bring awareness to the abilities of people with disabilities I couldn’t say no.
Disability InSIGHTS is a seminar designed to increase awareness of the abilities of people living with disabilities. I will be one of 7 speakers who will share stories of triumphs, obstacles, and breaking down barriers. More on this in a moment.
Typically when we hear stories of people who are on the front lines of social justice the conversation revolves around passion. There is something that ignites the fire within us to create positive change. While it’s true passion has a defining role in our advocacy efforts we seldom talk about another major player—fear.
Working Through Fear
Fear is universal and yet many times when we talk about success fear isn’t a major topic of conversation. I’ve lived a life of fear and a life of overcoming. Losing my eyesight was one of my greatest fears that I never thought I’d be able to accept. However, it was my fear of blindness that in part prompted me to create Bold Blind Beauty.
Fear was the reason why I declined an all-expense-paid trip to Kansas earlier this year. Even though the opportunity to empower blind & visually impaired youth was seductive I just couldn’t let go of my fear.
The thought of traveling out of state on what would be my first solo flight after my sight loss terrified me. Questions swirled around in my head like:
would I know where to go once I was dropped off curbside at the airport?
what if the assistance I requested ahead of time wasn’t available?
would I have a panic attack because everything I see is indistinguishable?
what if I had to use the restroom, would I get lost?
would the flight attendants show me to my seat?
since my trip connected through another airport what would that be like?
what would I do if I encountered problems because people doubted my disability?
how would I handle the prospect of being stranded?
With all these questions and more, you’d think I’d be satisfied with declining the trip but I wasn’t. Truth be told I was still unsettled yet I couldn’t articulate why. Thankfully, I was given another chance, this time I said YES! and I went to Kansas.
The Cumulative Effect
The Kansas trip was only the beginning of all the wonderful things to come this year as a result of my work at Bold Blind Beauty. While I’ve been blogging for nearly 5 years I cannot tell you the number of times I’ve questioned myself as to whether this is a fruitful effort. Then last year I partnered with advocate extraordinaire, Chelsea Nguyen, and together we founded CAPTIVATING! Magazine, a free, accessible online lifestyle magazine. CAPTIVATING! provides monthly content about culture and style for people of all abilities proving that inclusion is limitless.
As a result of my partnership with Chelsea, and my work with Bold Blind Beauty I’ve enjoyed these amazing experiences:
Kansas trip to empower blind & visually impaired youth
My trips to Kansas and Utah were sublime. CAPTIVATING!’s award from the Texas Rehabilitation Association was a delightful and totally unexpected surprise. Then filming the behind the scenes story of Bold Blind Beauty last week was extraordinary.
I’m eagerly anticipating the Disability InSIGHTS Seminar where I can share my tips on the path to social entrepreneurship. This event is being held in recognition of International Blindness Awareness Month and National Employment Disability Awareness Month. It will take place on October, 18 from 11 am – 3 pm at the Tom Ridge Environmental Center in Erie, PA.
Seeing The Beauty In People
I believe everyone has value. I also believe our perceptions of people can get in the way of our ability to appreciate their value. For far too long we’ve looked at people who are ‘different’ from ourselves and immediately leap to conclusions without knowing their story, without knowing them. When we add disabilities (visible and invisible) to this equation we become ‘experts’ in determining their worth and it isn’t fair nor is it right.
We all have moments of insecurity, uncertainty, and fear. I nearly let my fear keep me from life-changing events where I’ve learned so many valuable lessons. None of this means I won’t ever feel uncomfortable or downright scared. However, when I ask myself why inclusion, accessibility, and representation are so important my passion will continue to help me push through my fear.
Courage is contagious and when we share our vulnerabilities it empowers others. How about you? Can you think of a time that fear nearly prevented you from meaningful achievement?
Air is vital to sustaining all life. For people with disabilities, AIR is equally important to our survival. In this scenario AIR, symbolizes Accessibility, Inclusion, and Representation 3 key elements required to break down barriers.
Why We Need AIR: Accessibility Inclusion Representation
Accessibility, Inclusion, and Representation matters. As a person of color, over 50, female, and living with an acquired disability, I know how exclusion feels. Exclusion is one of the reasons social justice has always been important to me.
When you’re born into several marginalized groups there’s a certain amount of uncomfortable familiarity where discrimination and exclusion is concerned. There is a whole other level of discrimination when becoming a member of the disability community that makes day-to-day living a bit more uncertain. Well-meaning friends and family try their best to understand our experience and we try to help them by inviting them into our world. Living with a disability is a uniquely personalized experience for every. single. person. None of us, even those who share the exact same disability will live with it in the exact same way.
Many people aren’t aware that the disability community is the largest minority group in the United States. What makes our minority group different from others is anyone, at any time can become a member. Our community doesn’t care about your social status, education, sexual orientation, age, etc. ANYONE can acquire a disability during their lifespan. As we get older the likelihood of acquiring a disability increases significantly.
While we’ve made strides towards increasing accessibility, inclusion, and representation we still have a long way to go. The fight for equal rights in housing, education, employment, transportation, and more continues as we still face many barriers.
PBS did a moving documentary in 2011 on the Disability Rights Movement called “Lives Worth Living.” The first time I saw it I felt sadness, anger, and the need to act. People with disabilities share many of the characteristics of our non-disabled counterparts, we simply do things a little differently.
In my blog post, “Observing 25 Years of the ADA” I found this bit which I’ve edited: Our lack of understanding, fear, and inhumanity towards people with disabilities I believe, promotes continuing injustices. It’s no wonder when a life-altering event occurs and we acquire a disability, we have a difficult time adjusting. Coming face to face with our prejudices, then navigating a still-flawed system to protect our new status, can be a difficult transition.
Sadly, some of us take the stance that disability rights are ‘not our problem,’ that is until we are disabled. However, being ‘temporarily abled’ as the majority of us are, makes it our problem.
Air is free yet there are some who believe not everyone is deserving of AIR. Disabled lives are human lives and all human lives matter.
We’ve come a long way since the ADA became law however the fight for Accessibility, Inclusion, and Representation continues.
Featured Image Description:
Striking black and white photo of a silver skeleton key in mid-air aimed at a keyhole.
Capitol Crawl Image:
“A group of handicapped people led by 8-year-old Jennifer Keelan, left, crawl up the steps of the U.S. Capitol in Washington, March 12, 1990, to draw support for a key bill now pending in the House that would extend civil rights to disabled persons. The group of about 1,000 people or rode in wheelchairs down Pennsylvania Avenue from the White House to the Capitol. (AP Photo/Jeff Markowitz)“