Posted on 29 Comments

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 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

29 thoughts on “Raising the Blind on Sight Loss

  1. […] you are a person living with a disability you can be especially vulnerable. In response to some online bullying, Jill had this to say to a group of our […]

  2. EnLIGHteNing and informative, Steph. Seems assumptions make the world go ’round. You looked fabulous in the dress.

    1. Thank you D. =D

  3. Your analogy to being caught in fog is amazing. It really helps me understand the concept of blindness and people’s astonishing adaptability.

    1. Hi Caroline, thank you so much for visiting my blog and for your comment. It’s so gratifying to hear that my description of what it’s like losing vision helps people to understand.

  4. The Beecher quote is very appropriate for this piece. I also think your post and site both display a genuine heartfelt effort to engage readers in taking action towards displaying what the world sorely needs more of…now more than ever…compassion. A willingness to truly try to appreciate where our fellow human beings are coming from, going through, etc.

    1. Thank you for your very kind words. Compassion, it almost seems like it’s becoming obsolete with bullying at an all time high, lack of humanity and just plain meaness. We are human but our behavior at times seems worse than animals in the wild. I think part of the reason there is a lack of compassion is partly due to fear but also a lack of understanding and an unwillingness to even try to understand.

  5. Steph, thanks for standing up against this kind of bullying. BTW, I love the Beecher quote.

    1. Thanks Donna. Yeah I just couldn’t let this one go. Everyone is entitled to their opinion but when someone goes so far as to say that another individual is faking their disability (we know there are a few imposters out here but Emily is not one of them), I just can’t be silent. One of my other followers commented on a comment I made and she said something to the effect of compassion not being out of style. We are sorely in need of more compassion.

      1. Steph, As a kid growing up with RP, I got the whole “she’s faking it” a lot, including from teachers. At one point – I think I was ten – I actually thought I might have a mental problem that was making me think I had a vision problem. This kind of bullying or unkindness or whatever you wish to call it can be devastating.


      2. Oh Donna, to get it from kids is bad enough but adults? I can see how that sort of bullying would be devastating. Reasonable thinking people wouldn’t fake not being able to see. It’s hard enough just doing the day to day let alone having to deal with others who say nasty things for a condition over which you have no control. To me it seems so much easier to try to understand the other person’s situation. Just because something appears a certain way doesn’t necessarily mean it’s so. How many of us walk around with our “happy face” on but perhaps deep down we aren’t so happy? The same applies to anyone with any given situation such as illness, disability, etc.

      3. You’d think so, but people can be very cruel, and I’m not sure what they get out of it, unless it truly is (as I’ve often said) simply a way of reminding people of their “place.” unfortunately, all too often the good people stand around and do nothing. The whole social thing is indeed the hardest thing we have to deal with as people with vision loss. And, I am not discounting the difficulty of dealing with a marginally accessible digital world.


  6. Emily you are more than welcome and I’m so glad that you like the post. When I saw your message on FB about “the video” I was angry that someone would do such a thing to someone who is working so hard to change the mindsets of people with regard to disabilities. While my post makes it seem rather simplistic as to our options as people with disabilities because we know the daily struggles can be all too consuming at times. For the purposes of this post I wanted to focus on the good that you are doing without glorifying the bully (there are far too many of those attention-seeking indiviguals out there. .

  7. Steph I want to thank you for writing such a wonderful, expressive and eloquent blog about the topic of vision loss and the point that people with disabilities in short are faced with two options, to sink or swim. I think you are a very talented, driven and kind hearted woman and I’m so grateful for the support you showed me in the blog post. It really means a great deal that you took the time to sit down and write this blog and such lovely things about me. I am going to share this on my Facebook Page. Emily from Fashioneyesta xx

  8. That is horrible to hear people can be like that, good luck to her. Peace 🙂

    1. Thank you for your kind comment.

  9. I just want to thank you for sharing this post, and for your thoughtful replies to my comments. You are helping all of us to become more enlightened about these issues, and so many other issues that come about through the ripple effects that disabilities can create. You also inspire us with your practical advice and problem solving strategies.


  10. I use the fog theory to explain what I don’t see. Even though I have light perception; the explanation of the fog helps my customers understand what I don’t see.

  11. You really explained the plight of those with low and diminishing vision well. This is where my husband is. Mobility has been a challenge, and uses a cane now a lot of the time. He finally had to retire from a job he had held for 17 years around the beginning of 2014. The past three years have been hard, but he has a spirit like yours, and that has helped.


    1. Deciding to use the cane is a major deal to many people, myself included. Some days I don’t think about it and then there are others when I feel so conspicuous. And the thing with low vision while we can’t see many things there are situations when we are still aware of people doing things like staring and it can be unnerving. I am glad to hear that while it’s been tough your husband is doing well. I think it’s really hard when it happens later in life b/c when been so accustomed to working and managing on our own. I got laid off then went into retirement 2 years ago but it wasn’t due to my vision loss. My company was very supportive of my situation from when it began 10 years ago. Unfortunately not everyone has such a story which makes it all the more critical for those of us who persevere to tell our stories thus letting people know we are stil viable.

      1. I understand what you mean, especially about the cane.

        Once my husband told me that when interacting with sighted people it is very complicated when you are partially blind rather than completely blind.

        Of course he hopes to keep what little vision he has, but people want to know what he can see and what he can’t see, and that is so hard to explain, because he suffers from a number of different eye conditions that affect what he is able to see in different ways.

        One day his glaucoma might be up and he has pain and has to go lie down in a dark room. From the time he was a child he had 20/200 vision with his glasses on, but that vision was only in one eye; the other was completely blind and had to be removed in 1997 or 1998.

        Then around 2012 it began to deteriorate. However, he actually gained a little more close up vision, but lost a bunch of his distance vision (went down to about 20/400 with glasses on), and most of his peripheral vision was lost. He also became extremely light sensitive, so he functions differently at different times and in different settings.

        The cane has been helpful, but seems to not work well in crowded stores with narrow aisles.

      2. I hear this so oftern from people who have some functional vision and of course I too experience the same thing. I get that people don’t understand but I always go back to how I was raised and that is – not to stare at anyone for any reason. It doesn’t matter if I don’t understand why a person is using a device to enable them to get around independently it’s really none of my business. Most times I’d prefer for people to just ask me but then I get the “you don’t look blind” and “you get around so well” because I don’t meet their expectations for what a person with low vision is “supposed” to look like.

        Regarding your hubby’s vision changes due to his varying issues that makes it even harder to help people understand what can or cannot be seen. I think it boils down to we cannot accept that there are many levels to vision loss and even when two people have the same condition they won’t necessarily see the same way..

        My glaucoma doesn’t cause me any pain (thank goodness) but I have friends who’ve experiences are similar to your husband’s. The pain I get from time to time is from iritis and when it flares up I can’t tolerate light from any source. It literally brings me to my knees.

        I’ve applied to a guide dog school and am waiting to hear back. I think I’ll be able to get around substantially better with a dog than with the cane. I walk so fast that it gets hung up in cracks and such, stabbing me in the stomach. At least with a dog I wouldn’t have this issue.

  12. Great article.
    You and the blogger you wrote about here do something amazing for every visually impaired woman.

    1. Thank you Kerry!!

  13. Nice outfit Stephane..You look stunning….

    1. Thank you Swapna!! 🙂

  14. Steph, thanks for sharing Emily’s story without reposting the bullying words, and for educating us on vision impairment.

    Love the classic dress on you. Calvin dresses always fit so nicely.

    1. Thank you Rita, one of my sons suggested that going forward I should have my white can with me when I shoot pictures. I thought about it but since I take them inside I thought it might be overkill but now I’m rethinking and will give it a try.

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