Off the Cuff: Invisible Disability of Keratoconus

I treat a fairly large keratoconus population. Taking these patients from levels of visual disability or legal blindness to functionally sighted creates a huge and immediate positive change in the quality of their lives. Monitoring and fitting these individuals with medically necessary specialty lenses are some of the most rewarding patient interactions I have. Once their sight has been restored though, the level of disability these individuals have is not so obvious to others. You would think this would be a good thing, but the stories I hear regarding their employers and supervisors are just heartbreaking.

 

Letters to employers and filling out Family Medical Leave Act paperwork for keratoconus patients is a common occurrence. Annually I have to ask for accommodations for lighting, work from home requests, and computer setups so these individuals can do their jobs as well as time off requests so they can come to their appointments. I get the distinct impression some employers utilize this as a seemingly punitive measure. For one of my keratoconus patients that I needed to have out of her lenses for a few days to get ESP Eaglet profilometry measurements, it felt like we were having to move mountains to get those days off for her.

Another one of my keratoconus patients is a police officer. With his scleral lenses he meets all the vision requirements for his position, but the night glare off his corneal scarring makes it impossible for him to safely do night patrols. Every year I have to write a letter asking for an accommodation that he only works day shifts. He then told me how his direct supervisor harasses him about it in front of other officers so his co-workers have the same bad attitude of “must be nice” to never have to work night shifts. He gets mocked on the shooting range because they believe his vision couldn’t be that bad if he’s shooting that well. This has created a toxic work environment for him. Every time I see him I can tell he’s getting closer and closer to leaving his chosen profession.

I was taught the definition of visually disabled is 20/70 or worse with a patient wearing their best glasses or contact lenses. That got me thinking. If I fit these individuals with specialty contact lenses and get them better than 20/70, am I in a catch 22? They need the specialty lenses for their visual disability, but then don’t meet the definition of disability when wearing “their best contact lenses?” Turns out, no they’re not. In the American with Disabilities Act, it clearly states the level of disability is measured through “ordinary eyeglasses or contact lenses” and not through the measures taken to get them sighted (29 CFR §§1630.2(j)(1)(vi)). Interestingly, I found these supervisors/employers were in violation of all kinds of ADA requirements. I highly recommend taking a peruse.

I have now added a line to the end of my employer letters that seems to have made all the difference. “Please let me know if you need any assistance in navigating the Americans with Disabilities Act regulations and necessary accommodations as they apply to (insert patient name here).” Even though the disability of keratoconus is invisible to some, we’re in the position to make sure the patient protections in place shine bright.

Shannon L. Steinhäuser, OD, MS, FAAO Chief Medical Editor ssteinhauser@gmail.com

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Write to Dr. Shannon L. Steinhäuser, OD, MS, FAAO at ssteinhauser@gmail.com. The views expressed in this editorial are solely those of the author and do not necessarily represent the opinions of Jobson Medical Information LLC (JMI), or any other entities or individuals.