Living With a Disability Nobody Can See
My experience with keratoconus and invisible disability
With the recent 30th anniversary of the Americans with Disabilities Act, I have been reflecting on my disability– visual impairment caused by keratoconus. It’s been years now since my diagnosis with the degenerative condition of the cornea, and every year spent with this disorder poses challenges and comes with periods of self-reflection. At many points in my life, that self-reflection has turned to depression and fear. And at some others, the challenges I’ve overcome have made me feel on top of the world. Through all of these ups and downs, I’ve learned a lot both about myself and the world around me.
Keratoconus is a disorder in which the cornea progressively thins and bulges out into the shape of a cone. About one in 7,500 people suffer from the condition, according to a 2017 paper in the American Journal of Ophthalmology.
Depiction: Diagram of the eye with and without keratoconus. Photo Credit: Wikipedia
The reasons why this disorder arises currently aren’t known, but likely is a combination of genetic and environmental factors. For what it’s worth, my doctor who diagnosed me is a proponent of the theory that it has something to do with my allergies and rubbing my eyes, both of which were problems in my youth that could have contributed to my condition if the theory is true.
Before official diagnosis, it is frequently mistaken for nearsightedness given the rarity of keratoconus. In my case, I was diagnosed as being nearsighted in late middle school, and my vision was corrected with glasses. This worked for a couple of years. After several trips to the optometrist for incrementally stronger lens prescriptions over months and months, I was ordered to see a specialist where I was officially diagnosed with the condition.
From Bad to Worse to Okay-ish
Depiction: Simulation of vision with keratoconus. Photo Credit: Michiel Mobach
Above is the closest simulation to my vision I’ve ever been able to find online. It’s not perfect, but it shows a rough approximation of what I see right now. My right eye sees much worse than this and my left eye sees slightly better than this, but it gives you a feel of what the condition generally looks like. Here are some more to give you a broader sense of what others see. One silver lining is that both of my eyes didn’t go at once. As one of my eyes worsened at an alarming rate, the other was slow to degrade. The hope was that my good eye could be saved.
In 2018, I’ve received an operation to save my left eye from having the same fate as the other. Without this, I would surely be effectively blind right now. For now, everything is stable and I see well enough when I use my scleral lenses. I hope that things remain stable, and maybe I can afford a cornea transplant for my right eye someday.
The current state of things isn't perfect, but I've grown to feel somewhat at ease with it. Sometimes my deeper fears and anxieties are hard to subdue, but I currently feel as okay with my situation as I have ever felt.
“Come On, Really?”
People can and will judge you based on what they can see. Clothing, hairstyle, skin color, disfigurements, if you’re holding a dog, etc. The sad fact about this with respect to disability is that if you “look” disabled, people will make judgments accordingly. Someone may see a man in a wheelchair or a woman with Down syndrome and assume what they can and cannot do based on that cursory glance. The same is true for those with an invisible disability. For example, someone with chronic pain in their lower back may look “normal”, but could suffer from pain that debilitates them and hinders things like work and recreation.
A sad reality that I’ve come to learn is that if someone can’t see your disability, they are likely to display some sort of contempt when you mention it. Not even a huge amount of contempt. It can manifest as disregard or invalidation. Many times as mockery or sarcasm. A kind of attitude that says, “Come on, really?” It comes in many forms, but in my experience, it frequently comes in the form of doubt. “Can’t be that bad, can it?”
Yes, it is quite bad. And all of the explaining I need to do for myself because I can’t see is definitely not my favorite thing to do. For example, I quite frequently get asked why I just don’t wear glasses. I don’t wear glasses because my condition has progressed such that glasses cannot correct my vision. I’ve even been asked if I’m sure. I still don’t really know how to answer that, or if I even should.
Of course I’m sure. Why would you ask such a silly question? You wouldn’t ask if a paraplegic person was sure if they couldn’t walk, could you? Almost as though their object permanence hasn’t fully developed, some people just forget, ignore, and invalidate disabilities they can’t plainly see.
It's not too hard. Just show a bit of respect and decency to people and don’t invalidate their life experience because it doesn’t fit with your preconceived ideas about the world.
I don’t think people really understand how serious I am when discussing my condition. If I ever get punched wrong, I’m going blind. Guaranteed. If I get pepper-sprayed or tear-gassed, my eyes are most definitely going to be greatly damaged, especially if I’m wearing my lenses. But to some, this is more of a joke.
Honestly, I can’t count how many times I’ve been “jokingly” threatened with physical violence (primarily pepper spray or a punch in the eye) immediately after sharing the sensitivity of my eyes. I’m not personally offended by this; I’m confused by it more than anything. Especially considering these weird comments come from people who are practically strangers a lot of the time.
I say they're joking, but perhaps I’m giving an out when I shouldn't be. Maybe they don’t believe I’m actually telling them the truth and they’d like to test me. Maybe they're ignorant of what disability is and what it can look like. Or maybe they're just ignorant. That could be the case considering how many reports there are of women claiming to be on the receiving end of comments like, “You’re too pretty to be disabled.”
Those people are not edge-cases in my experience. Everyone has unconscious biases that cause them to make judgments on people of all abilities, mental and physical. But you should not project that discomfort you feel onto the disabled person. That’s where you cross a line. It’s not funny to say a young woman is too pretty to be in a wheelchair, or that you want to pepper spray me just to see what happens.
Again, it's all about decency. Empathy.
All I ever ask is just a bit of understanding. Many others I spoke with shared that sentiment. I've been fortunate to have friends and family who understand the situation I find myself in. I've had employers who are accommodating and generous. I'm so privileged to not have experienced things like doctors who don't believe me, employers who don't care about my condition, a family who underestimates my ability, friends who refuse to understand my limitations, and more. I'm also very happy that I've not lost my job or ability to do what I love either. Not everyone can call themselves this fortunate, and it's shameful that life is so difficult for so many through no fault of their own.
The world can be, and often is, so cruel to many with disabilities. Do your part and please practice empathy. Many people experience hostility at work, invalidation when they go to the doctor, and friends who are less than sensitive. Some feel the need to hide their disability to avoid stigma and judgment. The best thing you can do to help is to show compassion.
And please don't threaten to punch me in the face anymore.
I’m thankful that I’ve been able to speak with many people with a wide range of disabilities to help me gain a broader sense of what disability looks like. I have my personal experiences, but they are just that– personal.
There's so much more I could say, but I want to open this back up to discussion again. I want to keep hearing from people with disabilities and hopefully come back to this topic with even more insight. My Twitter is @amir_adan DMs are open and I’m always looking for new discussions and learning opportunities.
Disability is such a broad topic and the experiences of people with disabilities are so vast. I've been fortunate to have so many conversations so far and I hope I can continue to have more in the future.
Thank you so much to everyone who has reached out to me about this.