An Open Letter to all parents, professionals, and other loved ones of folks with Cerebral Visual Impairment (CVI)

From an Adult with CVI.

I have read countless resources on CVI. The recurring and overarching theme is about how to push CVI children to see as much as possible: whether it’s putting yellow mylar on doorknobs, or incorporating a red spoon into the child’s life so the child will learn to associate their visual cortex being stimulated with food, or reducing visual clutter in hopes the child will recognize their favorite toys visually, or showing them face after face after face, and so on and so forth.

All of these resources have one thing in common: tons of pressure on CVI kids to be as sighted as possible.

The first time I met another adult with CVI, we spent eight hours straight – yes, eight consecutive hours – swapping techniques that we had both used to pass as sighted.

Not tips on how to see things better. We both agreed that, even during our strongest visual years, trying to use our eyesight had always been exhausting, confusing, frightening, and straight up traumatic. We swapped tips on how we used our other senses so that we could fool people into thinking we were seeing things.

We learned how to hold onto a million other small pieces of data, and how to do constant mental math, moment-by-moment, so that we could calculate everything and all the pieces would add up to the illusion of seeing. Constantly running extra algorithms behind-the-scenes, carrying a heavy cognitive load, operating delicately under a thick blanket of anxiety sewn with threads of “What if I misjudge where I thought I heard that footstep was and my foot lands in a hole or crack instead?” “What if my eyes are pointing in the wrong direction?” “What if a ball hits me in the face, again?”

It was our only way of reconciling a world of being blind when no one around us knew we were blind. Not eye doctors. Not our families. Not a single soul. For years and years on end. Try to imagine being blind in a world made for sighted people, with no accommodations, no support, no understanding.

Our techniques were learned by force, not by choice, from a lifetime of pressure and dire consequences. The stakes were high to get it right. Sheer survival. We swapped stories of the consequences of when we failed to perform sightedness — from people assuming we were staring at them to “check them out” when we weren’t registering any part of their anatomy visually, to severe punishments when we didn’t successfully simulate eye contact just so.

We swapped stories of the consequences when we got “too good” at performing sightedness, too — people being convinced we were making eye contact when we were actually balancing their voices, believing we saw the couch when we had actually tracked and recorded the room layout kinesthetically, visually recalled the triangle on the visual memory test when we had actually processed it semantically as the Greek letter delta so that it wouldn’t slip away into an aphantasic void. THEY couldn’t see OUR layers and layers of mental calculus.

When we finally carved out enough space for ourselves, and gave ourselves permission to just be who we are, we were finally able to relax and melt into our natural world: our native language of Tactile. Kinesthetic. Vibration. The world that has worked for us all along.

The trustworthy, reliable world. We touch something and it’s there, and it’s tangible, secure, like solid ground underfoot. It makes sense. A language our brains can speak and feel. It is logical, familiar, informative, comforting.

We talked about the freedom of finally being allowed to be Blind. All the cognitive space that was suddenly available for other things. No more having to militaristically memorize every sidewalk crack on every route to avoid face-planting. We could just…trust our cane tip to show us. The amount of anxiety that lifted was indescribable. Enjoying reading for the first time ever when we both learned Braille, because we finally had brain-space to follow the story.

Guess where every single other person with CVI in my life has landed? Both those who qualify for blindness services and those who don’t. Living happily and successfully as a Blind adult, and in some cases, DeafBlind adult (often due to significant Central Auditory Processing Disorder or CAPD – CVI’s auditory cousin). Many of them have ended up there through being self-taught or taught by other CVIers since CVI has not been acknowledged separately, above and beyond how it sometimes intersects with acuity/field-based definitions of legal blindness.

Some still make use of their vision to an extent, just like some ocular-blind do, and some don’t. But the common denominator is that we all have non-visual techniques at our disposal. We are confident in our ability to function non-visually. Non-visual works every time. Whereas Visual is riddled with tricks and trapdoors, Tactile is surefire, failsafe.

Children with diagnosed CVI are at least fortunate in that their blindness has been identified. But even with a diagnosis, the pressure to function as visually as possible continues, decade after decade.

CVI parents and TVIs especially, this one is for you: please, let the child go with whatever is natural for them. If your child wants to use their eyes, they will. If they don’t, don’t force them to.

Tactile-Auditory-Energetic was always my native language, even when my ocular acuity was corrected. Not only was Eyesight a foreign language to me — but also, unlike actual languages, it wasn’t just a matter of learning it till I mastered it. I couldn’t master this one. It was like trying to hold sand in my fist. And trust me, I tried.

My classmates went to their after school extracurriculars. I went to the eye doctor. 4 vision therapy sessions a week for years. And even then, the exercises were all targeted at the oculomotor issues that often accompany CVI — not the CVI itself. At one point I was putting in THIRTEEN HOURS A DAY into vision rehab.

Did I see any improvements? Yes, some. Mostly I came out with nifty party tricks, like the ability to constrict and dilate my pupils on command. Yet they came at a steep price: I had no life. Because trying to become sighted was my whole life.

And here’s the thing: from a practical point of view, all those hours have not served me. But you know what skills I do use, everyday? To do my job, to type this right now, to run errands, to live and love and connect and embrace all the reasons to be alive? Braille. O&M. AT. ILS. Blindness rehab.

I continue to see this approach from the overwhelming majority of parents and professionals of kids with CVI, and from most sighted people who surround CVI folks — friends, family, etc. All the CVI blogs and textbooks I’ve read, the webinars I’ve taken, the emails about workshops I’ve passed on. Every activity and strategy revolves around stimulating their visual system and trying to get them to see stuff.

Why?

I wish I could put into words just how traumatizing this attitude is for so many CVI folks. Every CVI person that I have had a heart-to-heart shares agrees with me. How would you feel if your whole life was a never-ending eye exam?

Don’t get me wrong. If an individual with CVI wants to maximize visual functioning for themself, and they decide they want to put in all that time and effort into seeing, I support them 100%. As long as it is truly self-driven.

But how often is it self-driven? If you are a parent or TVI, when is the last time you asked your CVI kid what they wanted?

When you have CVI, seeing is not passive. Anything sight-related is active WORK. Relentless, grueling WORK. Tons of effort, very little payoff. It is always a big deal.

Do you let your kid opt out of searching for the face/mylar? Do you let your student close their eyes so they can really focus on what you’re saying? When is the last time you have let them say “not today”?

Please, let your children and students choose what world they want to be in. And please, let them have a life. Let them have friends and interests and activities and hobbies that don’t constantly revolve around this goal to see, see more, and see better.

Give them non-visual tools. Let them step into the visual world on their own terms, if and only if they so choose.

If your child wants to use their eyes, they will do that naturally. They will seek visually if that is where their interest lies. But if the photons of light that hit their retinas come in as such a jumbled mess of nonsense that they decide to retreat to a safe and reliable non-visual world, let them do that, too.

It doesn’t have to be one or the other. Some will explore both, if they want. They will move seamlessly between both worlds depending on how their brain and the environment and a million other factors, internal and external, intersect in a given moment. Maybe at times they will be visually curious and at other times they will absolutely need to tune out visually. Those are all options.

Some will be visually intrigued, but will still intuitively know that it’s not actually useful input for doing things — in the same way the intricate patterns and colors of a kaleidoscope may be fascinating and pretty to look at, but kaleidoscope-vision is outright terrifying and dangerous to rely on when it comes to crossing a street or hopping onto a train.

Whatever the case, just let them be. Your child will instinctively know if, when, and just how much they can trust the data landing on their eyeballs. They are the experts because there is only one person who is living with their brain inside their skull: them. No TVI, no parent, no other being, not even another person with CVI (because CVI is so complex and varied) shares their reality. It doesn’t matter how well you know your child or your student, you can never fully know their experience.

And no matter where they fall on the spectrum, they have a right to choose non-visual techniques, too. That includes Phase IIIers, and folks who score 9.5 on the Roman-Lantzy scale. And people with episodic blindness. And those with brain injuries that have milder effects on their vision. Because seeing is still a chore for them, too, and they also deserve breaks.

Being sighted is beautiful. Being Blind is beautiful. And all the space in-between is beautiful, too. Please, present your CVI child with options, and then give them the freedom to choose.

Your CVI child will grow up to be an amazing CVI adult either way.

Please note: To anyone responding, this is one of the most vulnerable and painful things I have ever written about. But I just could not go a day longer without saying something. Please be gentle and kind in your reactions. And keep in mind this topic is a deep wound for many CVI people who will be reading your comments.

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