The Use of Orthokeratology on Children: A Former Patient Perspective
Author’s Note: This essay goes against the clinical provider-centric understanding of using orthokeratology on children by giving a personable human account, my own experience and opinions with the treatment. I believe this work pertains to disability literature because it explores how colonial medical systems–in this case, optometry–cause harm in their chase of “cure,” while also criticizing ableist conventions around sight in our larger society.
Because this essay is about vision, I must clarify that I am sighted. My vision is correctable with single-lenses. I am writing about vision and my relationship to it because the use of orthokeratology (OK) on children is relatively new, and everything that has been written on OK and its use on children is through medical journals in a provider-perspective. They mostly say that children are pretty receptive and that there is only some initial discomfort (Turpin).
I only have a sample size of three to go on: my brother, my cousin, and I, but I know that it was really painful for all of us. My brother once joked that it was a form of long torture, but I don’t think he was really joking, one of those laugh so you don’t cry moments. For me, it never stopped hurting. I just got used to the pain.
Let me backtrack.
OK is used on children to reduce the progression of myopia. This was first discovered in 2005 by the British Contact Lens Symposium through a two-year study based in Hong Kong in an article that is not open access. I suppose this was post-handover Hong Kong so it wasn’t technically the British experimenting on their colonized subjects, but something about the power imbalances at play, especially when the experimental subjects were children of color, leaves a rotten taste in my mouth. Since then, there have been many more studies investigating the use of OK on children all over the world, some of which are still ongoing.
I started needing glasses around age 9. I couldn’t see the classroom board, the usual thing. Later, I started tripping over unpainted curbs. I got scared going down stairwells where the lighting was bad and the stairs had no color contrast, so I shoved another kid to go first and figured out how to count and memorize stair-steps. I learned to stick my house key into the lock mechanism purely through feel. My vision was and is correctable, but the myopic progression was quite fast and the rate of new prescriptions allotted by insurance was not keeping up. There were also many times when I wouldn’t wear my glasses when tumbling around as a chaotic kid since they never fit right on my face and kept falling off because the frames I had (and currently have) access to are designed for white faces. Besides the annoying stair-cases, I was not scared or surprised by my vision, as my brother and cousin were similar.
When I was 13, around 2011, the doctors decided I’d be a good candidate for OK. I remember feeling a cold shock of dread. I’m not sure if I was put in a study or not. Nothing was very well explained to me, though I was aware on some level this was a very new treatment, especially for children. I just knew for sure it would hurt from observing my brother cry a lot when he started. I suppose my child brain didn’t make the connection that if he was put on OK, I (and my cousin) would be too, until the reality was before me. I accepted it with the dissociated awareness that I could not say no. That is, I did not consent because the fact of bodily autonomy was not even on my radar.
My mother has pretty severe myopia that is not correctable with a typical single-lens. I remember her misguided guilt distinctly, how hard she pushed for OK because in her mind, making sure her kids weren’t like her meant everything. I knew I could not go against her decision, even as I know intimately how her motivations were formed by interpersonal and institutional experiences of sightism.
OK is a nightly treatment dubbed corneal refractive therapy. The doctors make it seem nifty and neat. You wear these contacts at night while sleeping, then after a short adjustment period, you have 20/20 during the day, and your myopic progression would slow or even halt. You wouldn’t have to wear glasses or contacts during the day, isn’t it great? I already had some idea of the reality, a perk of the observant younger sibling, so I took the pain quietly and without complaint. The pain is somehow dull and sharp at the same time. It is like there is a little man in your eyes repeatedly punching your eyeballs every single night for years. This is not doing it justice. I feel I will never be able to truly explain the unique hell of OK pain, but calling it torture feels accurate.
I don’t think I ever reached 20/20 as many finer details continued to elude me, but it was mostly good enough. As my teen years continued and the OK pain wore on me, my life got messy in other ways. Suffice it to say I was dealing with a lot, and soon, I found I had become an insomniac with some inaccurate mental health diagnoses. Less sleep meant less usable vision, so my sight became incredibly unstable, somewhat a physical return to my pre-OK days but sporadic and in abrupt intervals instead of the familiar ebb and flow of before. There were times where I was moving around completely reliant on memory and guessing and mirroring other people’s movements and times when I could read the classroom board with relative confidence, all completely dependent on the amount of sleep I got one and two nights before. My ankles are now permanently messed up due to countless tripped steps from sleep deprived bad vision days, but my peers just thought I was clumsy and adults just scolded me to look where I was going.
Maybe I should have brought some attention to the fact that I was not seeing well, but anytime I did say anything, it was almost always forgotten in the next breath. With my visual needs directly correlated to my level of harried sleep deprived exhaustion, I quickly grew tired of explaining myself. I learned there is this dominant assumption that people see the same way all the time, so my sight changes from day-to-day confused people. I also learned that bringing attention to not seeing things became an invitation for racist sinophobic scrutiny, especially from white teachers. So I stopped saying anything and learned to hide it, stewing in a burning quiet frustration, and shame festered. OK lenses taught me that seeing means pain means hating and fearing the way my eyes saw. I guessed endlessly and dangerously instead of going tactile because I internalized the shock and judgment and pity of visualism, the idea that using vision is somehow better or more valid than using other sensory means, that using non-visual senses indicates a pathologized wrongness and lacking. When going tactile was unavoidable, I would block with my body or divert attention like an illusionist, forcing my hands steady against my racing heart.
I finally stopped OK when I was 18, after graduating high school. I had a new optometrist at college, and when I told her about my history, she asked me many questions regarding my OK experience, nearly vibrating with academic excitement. I shrugged indifferently to all her questions, just said it hurt, and I was relieved I no longer had to put up with them. I remember her bemused confusion that no, that can’t be right, and I now laugh at the absurdity. Did she expect me to wax poetic over the so-called miracle of sight?
Since then, my progression has continued, more of a steady skip than the bounding sprint of my pre-OK days. I am currently in between prescriptions, with a longer wait than usual due to the raging pandemic. With my vision entering a waning period, screen magnification settings becoming fixtures, key-holes visually indecipherable, and unpainted curbs once again nuisances, I return to old tactile ways of being and feel urged to explore my unwilling participation in early OK treatments on children.
Perhaps, it is true that without OK I would currently need more correction than single-lens can provide, though it is impossible to say if single-lens will work in the future. Regardless of whether OK worked or not, this fixation on cure, on fixing myopic progression in children, is ultimately doomed. It taught me to fear the progression of my vision, seeking salvation in the medical, in the cure, but I am now coming to the steady acceptance that whatever happens, happens, cure be damned. What saved me and continues to save me is not OK or even corrective lenses, but the skills I picked up navigating a sighted world with poorly corrected vision. What saves me is tactile intuition: cool metal handrails when navigating a new stairway, fingers dancing over grooved controls of the old stove while cooking, smooth porcelain turning wet under a fingertip when tracking water levels visually becomes too cumbersome, or impossible.
There is joy and comfort in tactile. I am experiencing an emotional return to my pre-OK self that regarded my way of seeing and the adjustments I made as a simple fact of life, nothing more or less than a child learning about their world and how to interact with it. My shame over navigating through touch was learned, not a fact of my being. I once was happy counting stair-steps or kicking unpainted curbs to confirm their presence, though in an ideal world the stairs would be ramps or elevators and all the curbs would be painted and tactile paving would be more accurate and widely available.
I am no longer a child and while I cannot take back the years, I can say that I wish that I wasn’t put on OK, that the kind of solutions offered to me weren’t centered on manufacturing wrongness in my body and shame in my mind. I find I no longer care much about keeping up or being a step behind in this world where torturing children into seeing is not only unquestioned, but celebrated. I only care about keeping up insofar that I can continue to function and survive within the cold pragmatism of these capitalist confines. I find that sighted ways of being too often employ abuse of power. I find that the supposed tragedy of vision loss is an empty projection, a way for those who take sight for granted and value sight above all else to feel vindicated in their power of sculpting an exclusionary world. But in truth there is no moral supremacy in filling a cup through sight over doing the same through touch; either way, you have water to drink and keep you alive.
Works Cited
Turpin, Steven. “Orthokeratology Obstacles And How To Meet Them.” Eyes On Eyecare, https://eyesoneyecare.com/resources/orthokeratology-obstacles-strategies/. Accessed 4 Feb. 2022.
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About the Author
Rui Hua is a mid-twenties diasporic Chinese lesbian writer who is never on time. They have written about issues surrounding Chinese identity, western and Japanese imperialism, and mental health and disability, with a somewhat embarrassing background in the fanfiction writing realm.