Last week I chronicled the five-year process I had to go through to get medical documentation of my disability. I mentioned that I was dumbfounded that after going to my main eye doctor for a few years and finally throwing a fit, he mentioned that his practice had a low vision specialist that he could send me to.

I want to linger on this point today for a couple of reasons. First, it illustrates how much self-advocacy disabled folks often have to engage in just to get documentation of their disability. Second, it demonstrates how little many medical professionals know about the conditions disabled folks struggle with; and yet, the common requirement for a doctor’s documentation of a disability assumes that the person experiencing the disability has no knowledge of value about their disability. Only a medical professional’s knowledge of the disability has value.

Until the moment my doctor mentioned a low vision specialist, I didn’t know what “low vision” was or that there was such a thing as a “low vision specialist.” Despite not knowing the term low vision, I knew that I was having trouble driving, reading, navigating spaces, and more. I had chronicled on social media many of my mishaps. Everyone who interacted with me regularly knew I was struggling with some sort of debilitating vision issue. But none of that mattered in my pursuit of the documentation I needed to get accommodations at work.

I wondered for a long time why none of the eight doctors I was seeing to try to figure out what was wrong with my eyes had mentioned low vision or a low vision specialist to me sooner. I think part of the problem is that each doctor only notices what they specialize in, and I think another part of the problem is that “low vision specialists” treat people like me—the problematic patients, the cases that defy an obvious fix, the situations in which there might not be a neat and tidy diagnosis. Many disabled people have conditions like mine that are difficult to diagnose—fibromyalgia, for example, or lupus, or Lyme disease—and will need to see multiple doctors, many of whom will probably doubt their reports of what they are experiencing, to finally get the documentation that will have meaning at work or at school.

It turns out my husband is also one of those problematic patients. After his stroke, he was diagnosed with homonymous hemianopsia, which means he only sees the right half of the visual field out of each eye. The ophthalmologist who diagnosed it told us there was nothing that could be done. When I asked for a referral to the low vision specialist (my insurance only covers low vision specialists with a referral—and then charges a copay twice that of the usual copay), the ophthalmologist said, “Yes, but there’s nothing that can be done.”

Which is actually not true. There is plenty that can be done to help my husband maximize the vision he does have, which is exactly what a low vision specialist does. But the only reason I know that is because of my own vision challenges. Note that not only did the ophthalmologist NOT offer the information that a low vision specialist was available, he actively discouraged us from seeing her. He erroneously told us she wouldn’t be able to help. He doubted that I knew more about how to help my husband than he did.

Low vision specialists, unlike other eye doctors, focus on helping patients make the most of the vision they do have, which often involves “hack”-type strategies, such as, in my case, using a white cutting board for foods that are colorful and a colored cutting board for foods that are white. Because eye fatigue is a significant factor for me, my low vision specialist has worked a lot with me on strategies for reducing eye fatigue. One thing my low vision specialist has done that no other doctor did is to simply believe me when I told her I was having trouble seeing.

Our doctors doubt us. Our institutions doubt us. And then even with the documentation, our colleagues or professors or bosses doubt us. I am asked regularly at work if I really need the accommodations I have asked for.

I have a very simple suggestion for improving this situation in both academia and workplaces: consider the disabled person’s experience and expertise on their own situation to have value. Allow the disabled person to document their own experience. Consider the disabled person’s journal of their experience to be documentation. I was no less disabled before my diagnosis than after, and I could have easily provided documentation of my disability through journals and social media posts (my Facebook friends probably became very tired of me posting pictures of signs I couldn’t read because of lack of contrast), but my employer did not consider me disabled until a doctor said I was. My experience of having been disabled for five years had no value at all in my quest for accommodations.

We can do better.

I’ve previously blogged about the access fatigue that comes along with asking for accommodations. At my institution—and most others—students cannot ask for accommodations unless they are formally registered as having a disability with their campus disability services office. Similarly, faculty and staff cannot ask for accommodations unless they are formally registered as having a disability with their human resources office. This process in and of itself can be frustrating, time consuming, and expensive enough that many people never complete it, and thus, are never able to ask for accommodations.

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.

I’ve previously blogged about the access fatigue that comes along with asking for accommodations. Before you can even ask for accommodations, though, you need to know what to ask for, and that’s more difficult than it may seem.

With my low vision, for example, it may seem obvious that I need good lighting, but what exactly is good lighting? It’s not as simple as buying a good bright lamp. Most of the time, I need bright, preferably natural, light, with no shadows. But if my eyes have been working a lot, like if I’ve been reading or staring at a screen for several hours, that same light can hurt my eyes.

The lighting is part of what I need, but it is not, by itself, enough. I also need to be able to give my eyes frequent breaks and to limit the amount of work my eyes have to do in a day. “Work,” for my eyes, is anything that requires them to focus, including reading, using a computer, being in a remote meeting, and looking where I’m going when I am walking. Back when I was working on campus, if I had several meetings in different buildings, my eyes would be very tired by midday from me having to look where I was walking. When my eyes are tired, they don’t focus, making reading impossible.

I do not need large print to read, but I do need a serif font, and high contrast between the print and the background. Even with the right font and contrast, I often can’t tell the difference between the letters B, E, and the number 8; the letter Z and the number 2;  the letters F, K, P, R, and sometimes A; and the letters C, G, Q, O, and sometimes D. (Lowercase letters are equally confusing but in different ways. I recently realized that I had been misreading words spray-painted on a junction box I pass everyday while walking the dogs: I had misread “don’t make me dream alone” as “don’t make mr dream alone.” For over a year, I’ve wondered about who “mr” is and why he has to dream alone. I just realized my mistake earlier this week.)

What all of this means is that on a day when I have meetings in different buildings on campus, the light in my office that was perfect yesterday may be too bright today. Or reading for five hours may be doable one day but reading for even one hour on a day when I have multiple online meetings may not be possible. This fluctuation in what I need often makes asking for accommodations in advance of a situation difficult.

When students register with the disabilities services office, they need to state what accommodations they want from their professors. Without knowing the exact conditions they’ll be asked to work in, this can be challenging. Even if a student does know the exact conditions, their ability to function well under those conditions even with multiple accommodations may be impacted by other factors, such as what else they’ve done that day, how hydrated they are, the time of day, the weather, and more.

My daughter needed accommodations in high school, and despite extremely supportive teachers and staff, it felt like we were never requesting the right accommodations at the right time. She would find herself floundering in a particular situation, use the accommodations she was allowed, and continue floundering. After the situation was over, we would meet with her teachers to identify what would have helped. She would then ask for those new accommodations in the next situation, but still flounder because those accommodations were designed around the last situation, not the current one. We were always coming up with the accommodations that would have helped last time not next time.

I have a long-time employee in the Writing Center with a traumatic brain injury. She and I meet regularly to figure out what’s working and what isn’t. What worked in the past doesn’t always work in the present. For example, at times she’s needed to do most of her work early in the week, and at other times, she’s needed to do it only in the afternoons. We both have to be willing to tinker with existing processes, pilot new ones, and be uncomfortable. It’s frustrating for both of us, especially because we know that even when we find something that works, it’s only a temporary fix and there is no permanent one.

Despite that frustration, I think accepting that there is no permanent fix is what’s necessary because disabilities aren’t stable. Unfortunately, institutions, including academia, like stability. They assume stability works for everyone and when it doesn’t, that person is identified as the problem rather than the assumption of stability working for everyone being identified as the problem. The accommodations-for-disabilities system is premised on the ableist assumption that disability is a stable concept.  

Universal Design for Learning can help. Understanding disability as fluid can help. Identifying and pushing back against ableist assumptions can help.