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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

 

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Staff of Independence

White Cane Safety Day

WhiteImage of black background with white text & symbol of a person using the white cane. White Cane Safety Day 10-15-14. The white cane in its simplest terms represents a tool by blind and vision impaired people can lead independent lives.

October has been a busy month yet a good one in terms of bringing awareness to noble causes. Today marks another important day for blind and vision impaired people – White Cane Safety Day. Here in the US since 2001, today also represents Blind Americans Equality Day.

Imagine what it’s like to receive a life-altering diagnosis. Similar to the stages of grief the initial shock can only be described as traumatic while the brain tries to come to grips with what has been said. As a fully functioning adult losing independence is not an easy thing to endure.

Coming to terms with a major life change is difficult but not impossible. Learning new ways of doing what was once so familiar takes time and determination. Then one day you are given the gift of independence through a simple mobility device.

The long thin white cane is more than just a widely recognized tool for blind and vision impaired users – it is the means by which we can take our lives back. In its simplest terms, the white cane allows us to get back to the business of living our lives in the best way possible.

For more information on White Cane Safety Day, you can visit VisionAware.org to view their illuminating article.