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When People Say ‘You Don’t Look Like You’re Blind’

Not every disability is visible

When People Say ‘You Don’t Look Like You’re Blind’

Whenever I am out & about since I still possess a residual amount of sight, I can sense people staring. But I just keep moving onward past the expectations of others and how they ‘think’ blindness should appear.

Bold Blind Beauty

Featured Article on The Mighty

Recently I became a contributor to The Mighty an online community of people who share their stories of serious health conditions, disability, disease, and mental illness. The article below is my latest entry on what caused my sight loss and life after the “there’s no more we can do for you” conversation.

Image description is in the body of the post.

It was a little over 48 years ago when I put on my first pair of eyeglasses, and the feeling of seeing clearly for the first time was indescribable. The transition was like leaving a dark movie theater and stepping outdoors on a bright sunny day. My eyes needed time to adjust to everything suddenly appearing clear and focused.

For 36 years, I enjoyed perfect vision provided I wore corrective lenses. That all changed 11 years ago with two words: macular hole. It began when I removed one of my contact lenses, and I looked in the mirror to see half of my face missing.

While I had never heard of a macular hole before, I learned the macula provides the sharp, central vision needed for reading, driving and seeing fine detail. A macular hole is a small break in the macula, which located in the retina, is the center of the eye’s light-sensitive tissue.

Though all the statistics pointed to a favorable prognosis, it didn’t work out that way for metounfortunately. I’m reduced to counting fingers, since I can no longer see the eye chart. Developing macular holes in both eyes has destroyed my central vision.

I’ll never forget the devastating news. “Ms. McCoy,” the doctor said, “I’m so sorry to tell you there is nothing more we can do for you.” Those simple words confirmed my worst fears — I was now legally blind.

The doctor told me I lived with high myopia (extreme nearsightedness) all my life. He went on to say that even though I did all the “right things,” due to the high myopia, macular holes, surgeries and glaucoma, my vision loss was irreparable.

Appearances Can Be Deceiving

Prior to losing my sight, I used to think that when a person used a white cane, it meant they were totally blind (no light perception). I was wrong. The range of sight loss is enormous and differs greatly from one person to the next. There really is an immense gray area.

Professional headshot photo of me
Stephanae McCoy

To give you an idea of my sight loss, imagine yourself in a dense fog with visibility being only a couple of inches in front of your face. Your equilibrium is off and your steps unsure. You feel claustrophobic, as the fog is so heavy. Stumble, fall, repeat. It’s unending, and you wish it would just go away. You wake with it, you go to sleep with it and in between waking and sleeping you have to come to terms with the fog.

Once you acknowledge the fog is not going to dissipate, you find a way to navigate through it by learning new techniques. With time and patience, you gradually adapt until you become adept at working within the fog.

To the outside world you “look” as if all is well and you can clearly see. And since you use a white cane to safely navigate the world, many times people will say to you, “But you don’t look like you’re blind.

Bold Blind Beauty

People don’t understand how I can dress stylishly or put on my makeup. The expectation that all blind people have to appear or behave a certain way is a huge misconception. Quite simply, the people we were prior to the loss of our vision, and the things that brought us joy, are still intrinsic to who we are today.

Handling the Stigma on Sight Loss

What I’ve found since losing my sight is there are so many stylish women who are blind or have sight loss that I felt it was time for a fashionable icon to represent them. Abigail, the white cane icon and mascot on my blog Bold Blind Beauty, is a beautiful image that evokes power, independence, chicness, confidence and success — a woman on the move stepping forward with purpose.

Once, an eye doctor told me that it would be a tragedy for me to learn how to use the white cane when, in fact, I believe the real tragedy is the shame many people feel when losing their eyesight. Having a visual image that evokes beauty, confidence and purpose is one way to change the stigma surrounding blindness.

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Tell A Friend Tuesday!

Lost In Two Worlds

Blindness Symbols: For traffic safety - the white cane; For low vision recognition - the Checkered EyeMy friend and fellow “Woman on the Move,” Libby Thaw of The Checkered Eye Project, began a Facebook campaign earlier this year to increase awareness on low vision. I’ve featured Libby several times on Bold Blind Beauty and today I thought I’d share the ‘Tellafriend Tuesday,’ campaign here.

One of the joys I receive from this blog is the sense of community among our members. In addition to sharing style tips with women who are blind or sight impaired, I wanted to create a space where we can talk openly about blindness/sight loss to bring together sighted and non-sighted communities to share our experiences and learn from one another.

On a number of occasions we’ve talked about the vast range of sight loss, how blind people appear, and the dichotomy of living in the sighted and non-sighted world. For many people with low vision one of our major pain points is not being fully sighted yet not being fully blind. Case in point, check out the photos in this post of a few of my lovely friends who, if you were not aware, have sight loss.

Terri Rupp
Terri Rupp

Joy & Jenelle
Joy & Jenelle

Adapting to losing a major sense like eyesight is extremely difficult physically and compounded emotionally by the frustration of a hidden disability that others do not, or cannot understand. Think of it this way: if someone who appears healthy is diagnosed with cancer no one would say to that person “you don’t look like you have cancer.” The same holds true for people with low vision who may or may not require mobility aids.

Holly & baby Aoife Bonner
Holly & Aoife Bonner

Suzanne Gibson
Suzanne Gibson

Looking or not looking blind does not alter the fact that a person with significant sight loss may function well due to adaptability to their environment. What this means in part is once we’ve gotten the lay of the land we may not need to rely on our mobility devices if we use such devices to navigate. However if an unannounced change should occur within that environment it could cause a serious mishap.

Kimberly White
Kimberly White

Amy Bovaird Book signing
Amy Bovaird

Libby created the Checkered Eye to aid people with sight loss self identify their disability in face-to-face interactions and to help sighted people recognize that when a person is wearing the symbol it means that individual has sight loss. The black and white checkered eye—an image of a simple eye the center of which, the iris, is black and white checkers bears the text “LOW VISION”—is a wearable symbol to indicate its user has a sight impairment.

Jill Khoury Poet
Jill Khoury

Libby Thaw
Libby Thaw

What Can You Do To Help?

Since Tellafriend Tuesday is movement to increase understanding on sight loss Libby is asking us to share the message on social media.

You can help Libby tell the whole world there’s a “blindness spectrum” by sharing this blog post or downloading and sharing the “Blindness Symbols” image in this post.

Not everyone who looks sighted is fully sighted. Not everyone with a guide dog or white cane is fully blind. A bit of understanding can go a long way in the lives of people who are already managing some real difficulties.

Please share on your Facebook timeline, Twitter and/or Instagram and see if you can get a friend to share too! THANKS!

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Raising the Blind on Sight Loss

A Look At Not Seeing

Frontal view of me standing while leaning against my counter holding my tote bag.Earlier this week I was disturbed to come across an appalling Facebook post on one of my fellow bloggers and friend, Emily Davison, Founder of Fashioneyesta.com. Emily created Fashioneyesta, a fashion, and lifestyle blog, with the following points in mind:

  • to provide people who are blind or vision impaired the tools and resources they need to develop their personal style
  • to be a voice for people who are blind and vision impaired as it relates to the world of fashion
  • to raise awareness on the issue of accessibility for people with disabilities
  • to educate the public on vision-related issues
  • to address the preconceived myth that people who are blind or vision impaired are unfashionable

The post revolved around a YouTube video of an individual who made some pretty disparaging comments about Emily and her vision loss. I don’t know this individual or what motivated them to make the video (which has subsequently been taken down) but I can tell you this, I refuse to give a bully more air time.

What I can do however is share my thoughts on Emily and people like her who, in the face of adversity, instead of succumbing to life’s challenges they choose to rise above and make a difference. Emily knows firsthand how the beauty and fashion industries ignore people with disabilities as she is losing her vision to a condition called Septo-optic dysplasia, a rare congenital anomaly.

Three quarter view of me standing with my arms at my sides.

Though Emily’s eye condition has disabled her optic nerves, leaving her with no sight in her right eye and 10 percent central vision in her left, she hasn’t let this deter her passion for fashion. In spite of the prevalent assumption that people with vision loss do not care about their appearance which in turn leads a lack of products and services targeting our specific needs, people like Emily and many others continue to squash these faulty notions.

A Glimpse Into The Gray

Blindness is not black and white.

I used to think that when a person used a white cane, that meant they were totally blind (no light perception). I was wrong.

The range of vision loss is so enormous and differs so greatly from one person to the next that there really is an immense gray area. Imagine yourself in a dense fog with visibility being only a couple of inches in front of your face. Your equilibrium is off and your steps unsure. Though over time you adjust to the fog, it never lifts.

Frontal view sitting at the counter cross legged with one arm leaning on the counter.

Once you acknowledge that the fog is not going to dissipate you find a way to move through it by learning new techniques. Though it takes time and patience you gradually adapt until you become adept at navigating through the fog.

It’s such a heavy feeling this fog, you feel claustrophobic. Stumble, fall, repeat, it’s unending and you wish it would just go away. You wake with it, you go to sleep with it and in between waking and sleeping you have to come to terms with it.

To the outside world, you appear as if all is well and you can see clearly. This is the cruelty of low vision but you have a choice to quit or to move on.

Emily has chosen to move on, I have chosen to move on. Many, many, many more people in our situation have chosen to move on.

The people we were prior to our vision loss and the things that brought us joy are still intrinsic to who we are today. We just found a way to adapt.

Rear view standing at the counter.

I promised last week that I would share pictures of the outfit I wore to the women’s business conference I attended on Saturday. I felt like the subject matter of this post it would be a great opportunity to display the dichotomy of low vision yet having the appearance of seeing. Below is the description of my outfit:

Calvin Klein black short-sleeved, scoop necked sheath dress with a thin white belt and white piping around the neckline, sleeves and along the outer seams of the sleeves and sides of the dress down to the hemline. I wore black d’Orsay heels and carried a black and tan Liz Claiborne tote accented with tan and orange tassels.

The color contrast on the dress was so striking that I kept my jewelry to a minimum, wearing only a stretch rhinestone bracelet and rhinestone embellished drop earrings.

“The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won’t.” ~Henry Ward Beecher

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Observing 25 Years of the ADA

Protecting the Rights of People With Disabilities

15999939-equal-opportunitiesSunday, July 26 marks the 25th Anniversary of the Americans with Disabilities Act (ADA), a federal law that prohibits discrimination against people with disabilities. The ADA requires governments and programs on the local, state, and federal levels to be accessible, and that reasonable accommodations and modifications be provided in the workplace, restaurants, stores, public transit, communication, etc.

It’s incomprehensible to me that prior to the ADA‘s implementation basic civil rights like education, housing, and employment, were denied to untold millions of people based solely on their disabilities.

Up until the signing of the ADA in 1990, the fight for equal access was a long and arduous journey. If it weren’t for the many years of unfathomable, grueling work of dedicated change-making activists, the ADA would not exist today.

I find it interesting that as one of the largest minority groups in the U.S., even with the ADA in place, the struggle for equality for people with disabilities is ongoing. Could it be because the majority of us are not, and perhaps never will be affected by disabilities, that the insensitivity and mistreatment of people with disabilities continues?

Icon of a person walking with a white cane

Nix the Negativity

Dictionary.com defines disability as a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job. Ouch, if I thought the definition hurt here are a few words from the thesaurus: defect, impairment, incompetency, inability, incapacity, detriment. Looking at these words I can’t imagine anyone anxiously awaiting to be identified by any of them.

Our lack of understanding, fear, and inhumanity towards people with disabilities I believe, promotes the continuing injustices. It’s no wonder then, that when a life altering event occurs within our lives which renders us disabled, we have a difficult time adjusting.

Coming face to face with our prejudices, encountering the projected fears placed on us from those without disabilities, then navigating a still-flawed system to protect our new status, the transition can be most difficult. As reasonable thinking individuals, for some of us to admit that we view people with disabilities as defective while at the same time recognizing our intolerance, ignorance, and supposed superiority is a bitter pill to swallow.

Awareness to Understanding to Inclusion to Acceptance

The subject of disability is extremely complex because as many of us know, disabilities are not always physical, mental or visible. Further, for those of us with hidden disabilities throwing in the “do I disclose” or “not disclose” can have many implications.

Though legally we are protected by the law regardless of our choice, if we do not disclose then come up against a situation where open disclosure would have left no room for doubt, this issue becomes complicated. On the flip side if we do disclose we can open ourselves up to the very discrimination that we are protected against.

International Symbol of Accessibility Icon of a person in a wheelchair in motion
The Accessible Icon Project

It’s hard to believe that it was only back in 1986 when the outcome of a report, Toward Independence, indicated federal civil rights legislation was needed to protect people with disabilities. To think it wasn’t that long ago when many people with disabilities were institutionalized, abused, and even and put through forced (eugenics sterilization)  procedures is incredible. Forced sterilization by the way continued in the 1990’s through the 2000s (www.ourbodiesourselves.org and Center for Investigative Reporting).

Dehumanizing is the word that comes to mind when I think of the intentional and sometimes unintentional mistreatment of people with disabilities. I’ve had friends who use wheelchairs tell me just how irksome it is when people will not speak with them directly, rather they talk to the person who is with them about them.

Though we have our discriminations what we have to understand is disabilities do not discriminate. They can occur at any point in life, for any reason and can take on many forms including but not limited to psychiatric, physical, learning, blindness and deafness.

Pushing Forward

The misconceptions concerning disabilities and the limitations placed on people with disabilities abound. If you’ve never seen the movie on the disability movement, Lives Worth Living, I guarantee it will either alter or increase your understanding about disabilities and the people who live with them.

The people in the film are neither defective nor incompetent. They were clearly passionate for change and they made it happen.

Years ago I was thrust into advocacy within the disability arena on behalf of my son and my mother. I never considered at the time that I would one day need to be covered under the ADA but I’ll tell you what, I’m so thankful that it exists.

It’s true, we still have a lot of work yet to do. With the ever evolving advances in technology, we have to be mindful of those who may not have equal access to information; we have to remain vigilant to the point of changing legislation to set new policy direction. Like our predecessors in the film Lives Worth Living we must continue to advance quality of life and equal opportunity for all.

“Acceptance and tolerance and forgiveness, those are life-altering lessons.” ~Jessica Lange