Is Ruby Blind?

We receive this question on our posts more than any other: “Is Ruby blind?”

I try my best to respond to each person asking this question, but it can be a challenge. Often, our wonderful followers, who know so much about Ruby, jump in and answer the question for us. So, I thought it was time to create a blog post and answer this question thoroughly.

Here’s the short answer: Yes, Ruby is blind. But she’s not completely blind. She can see lights and colors.

And here’s the long answer: Many people believe that being “blind” means seeing nothing at all. However, it’s important to understand that blindness is really a spectrum, from those who are legally blind (a medically diagnosed central visual acuity of 20/200 or less in the better eye with the best possible correction) to those who do not have any light perception and see only black. I believe that Ruby falls somewhere in the middle of that spectrum based on my observations throughout her life. I prefer to use the term “visually impaired” versus “blind” because it’s not as polarizing.

What is Ruby’s Eye Condition Called?

When Ruby was first born, she was diagnosed with a disorder in both eyes called microphthalmia, which means “small eye.” She also has bilateral Peter’s Anomaly, which causes thinning and clouding of the corneas and makes Ruby’s eyes appear as if they do not have an iris (the colored part of the eye). Both of these conditions are part of Stromme Syndrome. At birth, these findings led doctors to believe that Ruby was completely blind in both eyes. However, as time went on, we realized that she has light perception in both of her eyes.

Ruby saw many different eye specialists as a newborn, including a cornea specialist, who discussed the possibility of a cornea transplant to remove the opaque cornea and replace it with a healthy, clear donor cornea. This seemed like a perfect solution, but it carried many risks, including rejection of the cornea, which would lead to complete loss of any light perception Ruby had. We decided that the risks were not worth the “potential” benefits of the surgery. We also discussed patching Ruby’s bad eye to strengthen her good eye (left), but I worried that might harm her bad eye further and she would reject the patching altogether. Other doctors suggested using spacers to make Ruby’s eye sockets larger and more “normal” looking and then fitting her with a prosthetic in her “bad eye.” Ultimately, I did not want to do anything that would cause further damage to Ruby’s vision or prevent her from reaching her full visual potential. Sometimes we get so obsessed with “fixing” things that we end up making them worse in the end.

Ruby began seeing a vision therapist through our school district when she was just a few months old. This specialist worked to increase Ruby’s interest in using her vision and taught me ways to stimulate Ruby’s vision with toys, graphics and sounds. Still, it seemed that Ruby could just barely see light and would never have any functional vision.

When Ruby was about 3 years old, she enjoyed playing with small plastic sorting discs and tapping them together. One day, we realized that Ruby wasn’t just randomly tapping these discs together — she was bringing each one up to her left eye and matching the colors together. Only when she found a match would she start tapping them! That’s when we realized that Ruby could see light AND colors! I was elated!

Over the years, Ruby has seen countless eye doctors and vision specialists to help her maximize her vision. She also receives orientation and mobility services through our school, which helps her learn to navigate, and she sees a vision teacher who helps her learn Braille and how to use her vision and other senses to function in her world.

Why Doesn’t Ruby Have Glasses?

Glasses or contact lenses correct vision because they allow the eye to focus light in the right spot on the retina — the spot that produces the clearest image. In eyes where there are structural issues and an opaque cornea, like Ruby’s, it can be difficult to impossible to properly correct vision with glasses or contact lenses. Not that I haven’t asked her eye doctors this question many, many times!

Also, if you’ve ever had an eye exam, you know that it’s a pretty intense process. You’re asked to read letters on a wall and look through a series of lenses for each eye to determine which helps you see better. Because Ruby also has developmental delays and she cannot read visual text, these exams would be impossible for her to participate in.

Does Ruby Use a White Cane?

A white cane is used by many people who are blind or visually impaired. The white cane allows its user to scan their surroundings for obstacles or orientation marks, but is also helpful to alert other people that the user is blind or visually impaired.

Ruby has always relied very heavily on her light perception to help her navigate, but a white cane would help her navigate much more safely and independently. However, Ruby has strongly resisted use of the cane. She prefers “sighted guide,” which is where a visually impaired person holds on to someone’s arm and is guided through the environment.

Currently, Ruby is using what we call a “pre-cane” at school, which she has named “Roxy the Roller.” It’s made out of PVC pipe and looks like a walker, but its role is to help her get more familiar with using a device to navigate. Our hope is that Ruby will get more comfortable using Roxy and graduate to a white cane in the near future.

Does Ruby Read Braille?

Braille is a system of raised dots that can be read with the fingers by people who are blind or who have low vision. Ruby has been exposed to Braille all of her life, however, she has found it to be quite challenging to learn. I have closed my eyes and run my fingers over lines of Braille and cannot fathom how hard it would be to learn with touch alone!

At the present moment, Ruby is participating in an amazing program at her school that gives her Braille instruction five days a week. Through one-on-one sessions with a vision teacher, Ruby is learning how to read many words in Braille. By making Braille fun and interesting, our hope is that Ruby will be excited to learn new words and discover that Braille will open up a wonderful new world of literacy for her.

Learn more about Braille

 If you have other questions, check out our Frequently Asked Questions page!