How Hard Is It To Get Documentation of a Disability?

It does not sound unreasonable to ask folks to provide documentation that they have a disability, but my own experience is a great example of how challenging it can be to fulfil that seemingly simple requirement.

I’ve been near-sighted since I was a kid, first getting glasses in the fourth grade, although I had been having trouble reading the chalkboard in school for at least a year or two before that. My near-sightedness got steadily worse, but was always correctable with glasses. I first began noticing that my vision problems, even with glasses, were disrupting my ability to work and participate in other activities, like driving and reading, in 2009. My eyes seemed to always hurt and on days when I had read or used my computer a lot, they would start throbbing painfully around midday and I would often see double for the last few hours of the day. I compensated by napping, which gave my eyes a break, and closing one eye while cooking and reading in the evening.

At a regular appointment to have my vision checked, I mentioned the throbbing and double-vision and the doctor told me to get more sleep. He said what I was describing was probably age-related and that I might need bifocals soon. Later that year, I drove through a tunnel and had the terrifying experience of not being able to see at all from the moment I entered it. Traffic was moving at 60 miles an hour and I wouldn’t have been able to see to pull over anyway, so I just kept going. When I got where I was going and told people what had happened, no one seemed overly alarmed and I felt silly for being so dramatic about the experience. I stopped driving routes that required tunnels and at night. I read less.

By 2012, my eyes were throbbing and painful all the time and I was no longer able to tolerate contact lenses. By this time, I had seen an ophthalmologist once a year for three years and nothing beyond typical age-related issues was identified. The ophthalmologist seemed to think my vision problems were nothing out of the ordinary, so I began to feel self-conscious about bringing them up with others.

By 2014, I was afraid to drive because I was having a hard time distinguishing between the road, the sidewalk, and the sky if it wasn’t perfectly blue. Driving down dirt roads was terrifying because I couldn’t distinguish between what was road and what wasn’t. I had a few dramatic trips off sidewalks while walking because I didn’t see that the level changed. However, nobody that I shared these experiences with seemed to think it was anything other than me being a bad driver (or a bad walker). I wondered if everyone had trouble seeing and was just faking it. I continued driving my daughter to school and myself to work, although I timed my trips to be during times when the roads were less crowded. I didn’t drive unless it was bright and sunny out. I drove slowly.

My non-driving incidents were becoming more frequent. At conferences, I began to have difficulty finding meeting rooms. On the first day of classes, I couldn’t find my classrooms. In presentations, I couldn’t read the slides. I walked into walls, fell down stairs, tripped on the sidewalk in my neighborhood regularly. At work, I sat in my office, which was an interior office with no windows, unable to read or use my computer and panicked. In classrooms, I walked into walls, wrote on a wall thinking it was a whiteboard, and lost my books when they blended in with the desk I was using.

Between 2014 and 2015, I saw eight different eye doctors, most of them more than once, trying to get a diagnosis. None of them found anything that in and of itself explained what I was experiencing, but some small bits of the puzzle begin falling into place: I had severe dry eyes, severe astigmatism, an auto-immune reaction to my own eyeballs, severe loss of eye elasticity, minor cataracts. Because each doctor only saw their piece of the puzzle, none of them thought I should be having the difficulties I reported with driving, reading, and simply navigating my world. More than once I was told I just wasn’t trying hard enough. None of these issues constituted a disability.

Near the end of 2015, I was having regular double vision that no one had diagnosed. My main eye doctor kept telling me he didn’t see any reason for the double vision and heavily implied that I was making it up to get attention—an idea he actually floated with my husband. I had had enough of being doubted and threw a good old-fashioned fit, which finally prompted him to say, “Well, I could send you to our low vision specialist.”

Wait, what?! I had never heard of low vision, much less a low vision specialist. Why, after years of visits, had no doctor ever mentioned low vision or a low vision specialist to me? (I will talk more about this in a later post.)

In December 2015, I saw the low vision specialist, who believed everything I said. She added two more pieces to my diagnoses: low contrast sensitivity and hypertropia. Once I had those two pieces in writing, I had the documentation I needed to get accommodations at work, or to get the process started. It was another three months before the HR representative, my supervisor, and I were actually able to sit down and talk about accommodations, and then, as I’ve written about previously, it took a long time to actually get the accommodations in place.

It took me six years and over twenty doctors’ visits to get a diagnosis. Even with my good health insurance, I spent over $1000 on co-pays. A more serious cost of getting my diagnosis was the time to get referrals and then go to see the different specialists, who were scattered across the metro area. Researching routes to take that didn’t involve construction, tunnels, and other driving hazards took time and caused a lot of anxiety. And then, ironically, many of the offices had signage I couldn’t read.

Now imagine the additional hurdles a person without health insurance, or a person of color, or a person with other challenges would have to face in meeting the seemingly simple requirement of documenting their disability.

Given how difficult it can be to simply secure that documentation, I’d like to see all workplaces and classrooms adopt the practices I mentioned last week to make spaces more accessible.

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