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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 low vision that I felt it was time for a fashionable icon to represent them. Abigale, 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.

51 thoughts on “When People Say ‘You Don’t Look Like You’re Blind’”

  1. Just found you from a comment on another site (which I found from a reblog from ANOTHER site), good sense of networking I suppose. I appreciate your insights and compassionate patience.

  2. I must tell you that I always find your articles so enlightening and uplifting and with all due respect, I am one of those who looks at your photos and say to myself, gosh, Steph is such a beautiful woman, how does she get it all done with the challenges that she has. You are super 🙂

  3. Great post Stephanae. There is something quite powerful when one embraces challenges throws at us. And you’ve done it with such style, flare and confidence. Well done.

  4. Yes! I am very very happy too! getting connected with many people who can relate because they also have vision loss and to share stories together, and to end the negative stigma. Letting people know that people with vision loss can live happy and successful life!

  5. I’m so happy you found my blog. It always makes my day when I have the opportunity to meet someone who’s also experienced sight loss. There are so many more of us out here and I’m hoping we can get to the point where sharing this information no longer promotes shame. Together we can make a difference. I’m heading over to your blog. Have a great day! Steph

  6. Hello Stephanae,
    This is my first time reading your blog post, it is really an amazing post! I really enjoyed reading it.
    Personally, I am also someone with vision loss, but I have just come to accept my disability not long ago. Life can be hard for someone living with a disability, but I’m so amazed at so many of those people living with such a difficult life and can still remain positive. Looking forward to read more of your inspirational stories in the future!

  7. I don’t blame you. Actually these days you’re not missing much. There are days I wish I didn’t have to have FB but I have a personal account, a page for the blog and a couple of groups. 🙂

  8. Lovely reflection, Steph. It’s important to keep those reminders going. There are so many examples of how stereotypes and limiting ideas get in the way of potentially great connections. Have a Tuesday full of understanding.

  9. It can be draining especially when a large amount of mental energy is spent trying to figure things out and/or missing happenings because I can’t tell what’s going on. However I realize that people aren’t saying these things to be intentionally cruel, they really don’t understand the nature of blindness. I read an article the other day about a woman with Alzheimer’s and was amazed that people say she doesn’t look like she has Alzheimer’s because of her appearing so lucid. The thing is Alzheimer’s like many other diseases begins somewhere yet the general public doesn’t recognize it until someone is in the latter stages. Assumptions like these are what drive me to create a dialog to help people understand we are all more alike than different and we need to be more accepting of others. As always, thank you so much SB for coming over, reading and commenting. <3

  10. My first reaction to the title was, “That is so incredibly disgusting.” Considering the activist you are, and how much you have given to your community, it must be exhausting dealing with ignorant remarks like that, yet again, after all that hard work. People who say these things don’t realise they’re being unkind and that’s unfortunate.

  11. Hahaha, yeah, I’m pretty much the same way now. Mainly because I’m tired of pretenses and once I turned 50 I really didn’t much care. And you’re right it is an illness.

  12. There is no reason to be ashamed – it’s just an illness like diabetes or multiple sclerosis. I tell EVERYONE now and you can tell that they look at me as if it was TMI…

  13. Steph, this is an amazing post – I feel proud knowing you – even if it is just WP, you are inspirational and I very much appreciate your honesty. Have a great day my friend! 🙂

  14. This is an awe inspiring story. Yes, I too have to deal with the fog. It’s frustrating as all get out; but still not looking like I’m blind. You always do a good job telling your story.

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