Category Archives: Accessibility + Dis/ability

Stop Shaming People Who Use Accommodations to Work Remotely

“Please make an effort.” “It would mean a lot to me if you were there in person.” “Make every effort to be there in person.” These are a few examples of the ablest and shaming rhetoric I’ve heard lately on campus about using accommodations to attend meetings remotely. My colleagues and I who have accommodations to attend meetings remotely are regularly asked to “make an effort” to attend face-to-face. The implication is clear: if you use your accommodation, you are not making an effort.

Campus leaders routinely engage in ableism, framing accommodations as attempts to not put in effort. I was recently in a meeting in which a colleague showed a video; as it began without subtitles, an attendee asked, “Can you turn the subtitles on?” The colleague said, “Can you just make an effort?”

Or using accommodations is framed as ruining everyone else’s fun, as in this example: A colleague described an icebreaker they had planned for a meeting that involved attendees doing some silly activities with a tight time limit. I asked, “What if some folks have accommodations for anxiety? Wouldn’t this ice breaker cause anxiety?” My colleague argued that the icebreaker was just for fun. For me, being humiliated by having an anxiety attack in from of my peers is not my idea of fun.

When people do use their accommodations, the culture of shaming can show up in disgruntled whispers of colleagues who ask incredulously, “What’s their disability?!” or comment, “I wish I didn’t have to attend in person!” or “It’s inconvenient for me, too, but I manage it.” These whispers are encouraged when the leader begins the meeting by saying, “That you all for making the effort to be here,” implying that folks who aren’t there didn’t make an effort.

I’ve written before about the challenges of getting documentation of a disability so I can get accommodations  and about why I don’t always ask for accommodations I am entitled to. The entire process of justifying accommodations is disempowering, humiliating, and time-consuming. Then, once a person goes through that process, they are shamed for using the accommodations.

On my campus, leaders regularly shame people who use their accommodations to attend meetings remotely instead of in person. Here are some examples of the shaming language I have heard lately:

What leaders say: “people are tired of remote meetings” or “staring at a screen is exhausting”

Translation: it’s your fault that people still have to attend remote meetings and be exhausted

But here’s the truth: many people dislike meetings whether they are remote or in person.

Here’s another truth: many people prefer remote meetings and are better able to engage when they can be home with their pets and/or children or in an environment they can control.

What leaders say: “I expect you to be there in person”

Translation: If you are not there in person, you are not meeting expectations. This echoes the language of evaluation in which people who are evaluated as doing their jobs poorly are rated “does not meet expectations.” Not meeting expectations is bad and shameful.

The truth: The expectations of leaders are often unreasonable and not grounded in the reality of workloads, bandwidths, and structural inequities.

What leaders say: “This is a reasonable expectation”

Translation: I have not done any research into this, but I strongly prefer in-person meetings and this is how we did things in the before-times and everyone was fine with it.

The truth: No, everyone was not actually fine with it. You didn’t ask or you weren’t listening or people didn’t feel empowered to speak up. Parents and other caregivers, people with disabilities and/or unreasonable workloads were not fine with it. I have never been fine with most in-person meetings, which are typically run badly and take me away from doing the meaningful work of teaching and research.

What leaders say: “The benefit of face-to-face meetings outweigh the convenience of attending from home via Zoom”

Translation: attending via Zoom is a mere convenience for people who are lazy, unmotivated, disengaged, and/or not prioritizing the important work that will happen at this meeting.

The truth: Accommodations are not about convenience, laziness, motivation, engagement, or priorities. Accommodations acknowledge differences in bodies and neurology. My glasses are technically an accommodation, not something I use because they are convenient or I am lazy. Glasses are commonplace enough that we don’t typically recognize them as an accommodation. Surely, a supervisor wouldn’t ban people from wearing glasses to a meeting. But if I ask for special lighting, I am likely to be told that there are others who will be bothered by that lighting. Why not let me attend remotely, then, so that I can control the lighting in my workspace without impacting others?

An anti-ableist alternative to all of these examples is to acknowledge that there is no one-size-fits-all mode for meetings. We might even begin by evaluating whether a meeting we are planning is necessary. Once the specific purposes of the meeting are identified, a reasonable judgment can be made about whether the purposes will be undermined by remote attendance.

Any time a leader questions the legitimacy of an accommodation, they create a culture of ableism in which disability is seen as evidence that someone is “broken.”

Disability = Normal. Disability ≠ Brokenness.

I’ve been very public with my vision issues and my recent experiences with anxiety. I do this to normalize disability. Living with disability is totally normal for me and for lots of other people. The most recent statistic I saw is that one in four adults in the U.S. has a disability at any given moment. The longer you live, the more likely it is that you will acquire a disability. My late husband is a great example: he lived without disability for decades and then when he was 60, he had a massive stroke that left him with multiple disabilities. He went from completely able-bodied to disabled in a split second.

Despite the fact that so many people are or will be disabled, we have a hard time as a culture understanding disability without judgment. The assumption that everyone is or should be able-bodied is called ableism and it is everywhere. I wrote about the challenges my late husband and I faced trying to get around downtown Denver when he was using a wheelchair last year. The restaurant that required wheelchair users to send a companion in to ask for help, wait for the right employee to materialize, get escorted around the building, and then traverse a large space in front of an audience had designed its entrance with the assumption that all patrons would be able-bodied.

I recently listened to a fantastic podcast on ableism. Glennon Doyle featured Carson Tueller on the July 27 episode of her podcast We Can Do Hard Things. The episode was titled “How to Love Your Body Now,” which is an idea that can apply to anyone, able-bodied or disabled. Carson Tueller, who was paralyzed from the chest down in an accident in 2013, told the story of how he came to accept, love, and feel at home in his body, recognizing it as “complete and enough.”

Tueller explains ableism as “the idea that there is such a thing as a good body and a disabled body is a broken version of a good body.” I like this explanation because of its use of the word “broken.” Something that is broken is damaged or ruined. We throw out things that are broken. When we understand some bodies as broken, we bring with us into that understanding the connotations of “broken”—that the body is ruined, it should be thrown out. The person living in the disabled body is seen as disposable. Unlovable. Unworthy.

Tueller shares that after his accident, he found a new way of thinking about his body. Instead of thinking of his body as broken, he thought, “My body now works differently.” That may seem like a small shift, but as Tueller explains, there is “no drama, no brokenness there” and that thinking of the accident as something that changed his life rather than as “a disaster that ruined my life” made it possible for him to see his body in its current state as complete rather than broken.

Notice that it’s not the injury or disability itself that causes the feelings of disposability or unworthiness—it’s the ableism that assumes a disabled body is broken. As Tueller says, “I can survive being paralyzed. I can’t survive feeling unlovable.” Tueller has found that living in a disabled body is quite wonderful (and I was thrilled to hear him disrupt the notion that disabled bodies aren’t sexy or that disabled people are asexual—he is having great sex).

When we assume that disability needs fixing, we convey that disability is a de facto problem, that something is wrong with people who have disabilities. There is nothing wrong with my eyes. My eyes can’t be wrong. Yes, my eyes function differently from lots of other eyes. But my frustrations with my vision are usually connected to something outside of me that could be fixed. For example, one of my most common challenges is not being able to read signs. Why is the assumption that my eyes are the problem rather than the poorly designed signs? I meet people all the time who can’t read street name signs, street numbers on buildings, and the like. Why not just make bigger signs or use a different font and make everything easier for everyone?

This idea that the problem is located in the person with the disability is ableism and it sneaks into our lives in insidious ways. In “Unlearning the Ableism of Cookbooks and Kitchen Wisdom,” Gabrielle Drolet brings attention to what she calls small-scale disability—”the little things that add up to make a life. Things like tying your shoelaces or braiding your hair or lighting a candle. Like turning on the faucets to wash your hands. Texting your friends. Cooking with ease.” The type of ableism Drolet identifies in cookbooks is less about brokenness and more about laziness. The cook who buys pre-ground pepper or uses paper plates is assumed to be lazy or wasteful. I was called wasteful when I bought two identical cutting boards, one in white and one in green, but with low vision, I can’t see the onion I’m cutting on a white board or the basil I’m cutting on a green board. The person who called me wasteful didn’t ask why I wanted two boards—they jumped straight to calling me wasteful.

Ableism is so deeply baked into our culture that during Disability Pride Month (July), someone asked me why anyone would take pride in being disabled. This was a person I know to be kind and generous. The question was a genuine one and grew out of the idea that being disabled equals being broken. Why take pride in being broken? To grasp taking pride in being disabled, you have to reject the idea that disability equals brokenness.

I am not broken. I do not need fixing. I love myself, my eyes, and even my anxiety. My low vision and anxiety are natural and normal. I refuse to be ashamed of them.

How I Make Hotel Rooms Accessible for My Low Vision

I’ve done some traveling this summer and stayed in a variety of hotels in both the U.S. and Europe. I’ve always loved traveling and am excited that travel feels doable now that so many people have been vaccinated against COVID. With my vision impairments, I run into some issues in hotels, so I have come up with a routine I use to maximize my ability to see and be comfortable and safe in my room and the public areas of the hotel.

Room numbers not always visible to me, so I’m now used to putting my face right up to a door to try to find the room number. I can often see that there is a room number on the room doors or right next to them, but I can’t read the numbers because of the artistic font used. I sometimes take a picture of the number with my phone and then make the picture big enough for me to read. The first number I take a picture of is never my room number, but having that one number down helps orient me a bit.

Accessible hotel rooms are typically designed with wheelchair users in mind. Accessible rooms usually have doorways wide enough for a wheelchair, wheelchair access on both sides of the bed, enough room for a wheelchair user to make a U-turn, light switches and thermostats low enough for someone in a wheelchair to reach them, and a wheelchair accessible sink and shower. I have yet to find a room that is really accessible for someone with my kind of low vision without some tweaks.

Every hotel room I’ve stayed in during the past five years has been too dark for me once the sun goes down. I now routinely move lamps around, it they are available, and I’ve even called the front desk to ask if another lamp could be brought to me (it could). I’ve learned the hard way to move lamps around before the sun goes down, when I can still see where the cords are plugged in and where the outlets are in the spot I want to move the lamp to. Sometimes hotel rooms have a writing desk that doesn’t have a lamp on it; that’s the first place I move a lamp to. Hotel rooms often have a comfortable reading chair but no light source near that chair. If I can move a table lamp to a nightstand or dresser that is near that chair, I do, but sometimes that isn’t possible and I have to either call the front desk to see if a floor lamp is available (sometimes one is) or I just have to not use the reading chair.

The next thing I do is find every light switch in the room and figure out which light it operates. Light switches are often the same color as the wall, so I sometimes have to guess where a light switch might be and run my hands along the wall until I find it. Typical places are right inside the door, at the joint of two walls, and near a door frame. Occasionally I have to call the front desk to ask where a light switch is. Usually, the person who answers my call initially says something unhelpful like, “It’s there, I promise.” When I explain that I am vision-impaired, they usually send someone to the room to show me where the switch is. Once, the person who was sent had to admit defeat and say, “I don’t know where the switch for that light is!” Nobody ever found it.

I then walk around to each light in the room and figure out how to turn it on. Many modern light fixtures have switches that are designed to not be obtrusive, which means they are hard to see. I often have to run my hands all over a lamp to find the switch. When that fails, I start running my hands down the cord to see if the switch is on the cord. A few times I’ve had to call the front desk to ask how a particular light works.

I try to do all this before the sun goes down, because when I come back to my room after dark, it’s nice to have some familiarity with how the lights turn on. This isn’t possible if I check in after dark, and then I rely on my cell phone’s flashlight to help me navigate the light switches.

The next thing I do is scan the room for contrast issues. This usually means making sure there’s a light-colored surface for me to put my own dark-colored things and a dark-colored surface for me to put my own light-colored things. I can easily lose a white keycard on a white or light-colored surface, so it’s important to scope out a place to put my keycard where it will be visible to me. I can put down a white washcloth from the bathroom on a dark surface, like a dresser or TV console, and then put dark things on top of it to make them visible. Hotel bathrooms are often white, so I use a black bag for my toiletries. Many rooms have a white tissue box holder in a white bathroom, so I move the tissue box holder to a dark piece of furniture in the room.

Another place where contrast issues can come up is with clever drawer or cabinet pulls that are designed to blend seamlessly into the furniture. I spend a lot of time when I first in a room running my hands over surfaces, looking for pulls.

In one room recently, I accidentally swept something I hadn’t seen off a dark wood desk. I heard the object clatter to the floor and dropped to my hands and knees to pick it up. It was a big dark room phone.

I can’t tweak the public areas of a hotel, so I have to move through them very carefully. Dim lighting is everywhere and I’ve tripped over coffee tables, walked into glass panes, and spent way too long trying to decipher which restroom is for women (in a few places, I never was certain and figured in the age of gender neutral bathrooms, it shouldn’t matter if I go into the wrong one).

If possible, I look at photos of the hotel’s lobby and outdoor spaces online before I go to scope out potential danger for myself. I can enlarge the photos and get a sense of what to look for. For example, I noticed ahead of time that one hotel I was staying in had a very large water feature that blended into a surrounding patio. When I got to that hotel, I walked very carefully over to where I knew from the photos the water feature was and found some cues to help me avoid tumbling into it during my stay.

Once I’ve done all that, I can commence the part of staying in a hotel room that I’m really good at: relaxing.

Disabled Folks Aren’t Always Looking for a Cure and You Should be OK with That

I’m actually pretty ok most of the time with my impaired vision. I gave up driving in 2019. I read with my eyes a lot less than I used to. I write with my eyes a bit less than I used to. I’ve been not driving for long enough that it feels completely normal to me to rely on public transportation and rideshares. Not being able to make sustained eye contact with people in conversation is trickier, and while adapting to reading and writing less with my eyes has been challenging, I am getting better, which makes me think it will eventually feel comfortable to me.

My impaired vision seems to matter much more to other people than to me. Many people ask about my vision when they greet me, which I take as a way to acknowledge that they remember I have impaired vision and they hope it isn’t negatively impacting me. These inquiries don’t bother me at all. I am also not bothered at all when people don’t ask about my vision, which to me acknowledges that impaired vision is part of who I am, the same way being short or having big hair is part of who I am and doesn’t need to be commented on.

What does bother me:

  1. When that inquiry turns into a grilling about what I’ve tried or researched to “fix” my vision, or someone aggressively suggesting I contact the doctor they know. I spent years getting my diagnosis and I spend a lot more time than the average person with vision specialists just to maintain the vision I do have. I don’t want to put more time and energy into it. I have made a deliberate choice about how much time and energy to put into my vision issues and I don’t appreciate having that choice challenged by someone who has not experienced disability—and it seems to always be able-bodied folks who do the grilling.

Establishing boundaries around the time and energy I put into this is not “giving up.” It’s not weakness. It’s not laziness. It’s a deliberate choice I’ve made that takes strength to defend on a regular basis. The vast majority of the time, my vision issues don’t keep me from doing what I want to do. For example, in early June, I traveled by myself to a country I had never been to before that is not very accommodating to folks with disabilities. My vision issues made the trip a bit more complicated than it might have been for someone with “normal vision,” but it was absolutely doable for me. I am very happy with my life and don’t feel like my vision impairment makes my life worse.

What does make my life worse is being judged by others for not “doing everything possible” to fix my vision. When I tell someone who is grilling me to back off, they often respond with, “Well, I just thought you’d want to do everything possible.” Everything possible seems to be a euphemism for making my vision impairment the sole focus of my life. No, I would like to spend my limited time on earth doing much more interesting and satisfying things.

  • When the news that my vision has not improved at all is received ruefully. I’ve seen people be visibly deflated when they hear my vision hasn’t improved. Because I’ve stopped hoping for improvement, the lack of improvement doesn’t bother me, and it seems to me, that if it doesn’t bother me, it shouldn’t significantly bother someone else. But neoliberal culture values constant improvement, which means a lack of improvement must be cause for disappointment.

These two types of responses put the focus on fixing a problem and render invisible the work that matters to me: my adapting to my impaired vision, learning to work through and around the barriers in the world, and living the best life I can with the vision I have.

Panic Attacks, Grief, and Fear

I’m still experiencing double vision and unable to read or write very much. Because of the dismissive attitude I’ve encountered about my vision from most eye doctors, I don’t want to see anyone but my favorite eye doctor, and she’s booked out for 3-4 months, so I haven’t seen anyone about this latest development. I’m making do for now by minimizing time spent reading and using Google’s voice dictation for writing.

I think this latest vision issue, along with the fact that the upcoming two-year anniversary of my dead husband’s stroke is on June 7 and the one-year anniversary of his death is on June 19, is contributing to a new wrinkle in my grieving: panic attacks. I had panic attacks for some time 20-30 years ago, always connected to interactions with a particular person. They were bad enough that I would hyperventilate, but because they were so clearly connected to interactions with a particular person, I could predict and prepare for them. What has started happening in the past week is different.

I’ve had two, one during the day and one at night. They were very dramatic, disruptive, and unexpected. Both times, I suddenly felt overwhelmed by a feeling of impending doom, heaviness in my chest, and trouble breathing. That quickly escalated to hyperventilating. I was in a Zoom meeting with very understanding colleagues the first time. The second time, my daughter, who has experienced panic attacks, was with me.

I attended a grief support group meeting over the weekend in which we talked about how the lead-up to difficult anniversaries and milestones is often much more difficult than the anniversary and its aftermath. That was my experience with my wedding anniversary and my dead husband’s birthday. With the stroke and death anniversaries coming up and the added stress of my double vision, I think my brain was overwhelmed and started sending distress signals out.

This TED Talk gives a succinct explanation of the current theory and understanding of panic attacks. Most interesting to me is that the fear of another attack can actually bring on more attacks. After having one at night, which woke me up and made it difficult to go to sleep again, I spent much of the following day dreading what would happen when I tried to go to sleep again. This is exactly the cycle that can cause another one. Once I realized what was happening, I was able to take preventive measures: I did yoga, had a cup of herbal tea, practiced box breathing, and listened to soothing children’s audiobooks.

Meditation made things worse, which surprised me. I’ve been meditating for 30 years and it’s been my go-to method for stress relief for decades. It turns out that emptying my mind just created space for panic. For me, engaging my physical body through movement, breathing, and the sensory experiences of drinking tea and listening to audiobooks seems to help assure my brain that I am not in danger.

I’m experimenting with giving myself permission to have big feelings of fear. That feels scary and overwhelming sometimes, but I think that pushing those feelings away when they come up builds up my panic response to them. Perhaps refusing to allow myself to think about losing my vision completely or being unable to read and write again has trained my brain that those thoughts are dangerous, so when they start to rise up, even in small ways, my brain reacts by panicking. I’m trying to allow those feelings, like I’ve leaned into my feelings of grief. This means engaging very consciously again with meditation teacher Doug Kraft’s “three essential moves”: turning toward, relaxing into, and savoring peace. It’s hard. I don’t want to turn toward my fears about my vision. I want to push them away, but inviting them in and getting to know them is what will make them feel more familiar and less terrifying.

I don’t usually acknowledge my fears about my vision. Before my husband died, it was easy to tell myself that if I went blind, he would take care of me. But I’m on my own now. I don’t think I’ve ever admitted on this blog that I do worry about going blind. Writing that sentence and leaving it there for you to read feels like some major turning toward. I’m not ready to relax into it. Maybe next week.  

Wondering When & How to Disclose Disability with Colleagues

I have now gone 19 days with double vision. There was one day in there where my vision was double for only an hour or so, but the rest of the days, I’ve been lucky to have a solid hour of time when my eyes are really functioning normally.

Double vision makes it much harder for me to pass as not disabled, so the question of whether and how to disclose my disability has been more pressing the last few weeks. I mentioned last week that I added a disclosure to my email signature. This week I wondered whether I should disclose to a group of 23 colleagues who participated in a two-day workshop I facilitated.

The decision of whether or not to disclose to a group of people is never a simple one. I’ve mentioned before Annika Konrad’s concept of access fatigue, which is the exhaustion disabled people experience from having to constantly educate others about their disabilities and needs, enable others to feel helpful even when they are doing the very barest minimum to make something accessible and/or doing it very grouchily, and balance the costs of asking for access with the benefits of actually getting it. I hear often hear people disparage folks who disclose as “making excuses” or “looking for attention.” Even though I know I am not doing those things, it weighs on me that I will likely be seen as doing those things by some people.

I have gotten into the habit of disclosing my disabilities to my students on the first day of class. When I did that for the first time years ago, I received an outpouring of positive support and gratitude from my students. Many of them told me that seeing an authority figure disclose a disability helped them feel more welcomed and included in the class. Some of those students had disabilities themselves, but many didn’t and simply felt that having a professor who was open about being disabled created a culture of acceptance. In all the years I’ve been disclosing to my classes, I’ve never had any negative reactions, so for me, it’s a no brainer to disclose to students. I’ve had similar positive responses in the Writing Center I direct from the staff. In both these cases, though, I have a lot of privilege: in the classroom, I’m a tenured professor. In the Writing Center, I’m the boss.

My position is different with colleagues. We are peers in a sector in which being overworked and burned out or close to it is almost valorized. If it looks like I am making excuses and doing less work than they are, they could see me as someone who isn’t pulling their weight and therefore creating more work for them. Before the workshop, I had communicated by email with the participants several times, so they had all seen my email disclosure, although I don’t know how many people actually read my signature or remembered it by the time the workshop began on Monday. I decided not to make any additional announcements about my impaired vision, but several times on Monday and Tuesday morning, I found myself awkwardly trying to pass for someone with unimpaired vision. Then I did a presentation on Tuesday around midday, and that’s when I very much regretted trying to pass.

I got to a part of my presentation where I had planned to read a dense paragraph of text. It simply wasn’t possible—the words and letters swam before my eyes and nothing would come into focus. I said to the audience, “I’m sorry, I’m experiencing double vision that is making it impossible to read this,” and a participant immediately said, “I’ll read it” and did so.

I got no sense of any negative judgment from anyone about this incident, but I wish I had not apologized for my double vision. It is very important to me to not apologize for my disability because it is not mine to apologize for. I prefer to thank people for helping me rather than apologize. I also prefer to disclose in ways that frame disability as normal, and I’m not sure that the way I handled the situation did that, although I do really like that my colleague jumping in to help positioned accommodating on the fly as normal.

Although I’m not happy with how I handled this situation, I’m not sure what I would do differently if I could have a do-over. Maybe simply deleting the “I’m sorry” from what I said, since that’s the part that bothers me. I’m not sorry for having a vision impairment. Or perhaps I could have asked at the outset of my presentation for a volunteer to read the text when I got to that part of the presentation.

Ideally, I’d like to have a default way of handling this type of situation with colleagues so I don’t have to think about it whenever it happens. My default with students and the Writing Center staff is to disclose explicitly and immediately, which eliminates the need for me to make a decision about when and how to disclose. I want that same simplicity with colleagues.

Living with Low Vision

One aspect of my vision impairment that makes it difficult to explain to others is that there isn’t one neat and tidy condition or issue that I have. “Low vision” is a generic term for a variety of conditions that result in impaired vision that can’t be corrected with glasses or surgery. My low vision is caused by a combination of conditions that probably could be corrected with glasses or surgery if they were my only condition, but the combination causes complications.

Here’s what I have been diagnosed with, in order of most common to least common:

  1. Nearsightedness. Lots of people have this and it is typically corrected with glasses. With glasses, I can get a 20/40 correction.
  2. Astigmatism. This is another condition many people have and it can typically be corrected with glasses. Mine is severe enough that I can’t get a perfect correction.
  3. Dry eyes. Another common condition. I use prescription eye drops twice a day and non-prescription eye drops throughout the day, but still, my eyes feel scratchy most of the time.
  4. Presbyopia. Difficulty seeing things close up. This is a common condition that causes folks my age and older to need reading glasses.
  5. Nuclear sclerosis. This is a form of cataract that many people my age and older get. It’s not bad enough yet to warrant surgery. It makes everything look a little cloudy to me.
  6. Photophobia. Sensitivity to bright light. Can be mitigated with sunglasses and a hat with a brim, but because of my low contrast sensitivity (see #8), I am even more dangerous with sunglasses than without.
  7. Hypertropia. This means my eyes don’t focus in the same spot. It is somewhat corrected by prisms in my glasses, but the correction isn’t perfect, and when I’m tired or I’ve been reading or writing a lot, my hypertropia gets worse, which leads to double-vision.
  8. Low contrast sensitivity. This is the condition I usually mention when people ask me about my low vision because it’s the one that’s not common and fairly easy to explain. The “not common” piece is important because if I say I have nearsightedness or astigmatism, people dismiss my claim to be visually impaired immediately because so many people have those conditions. The low contrast sensitivity is what makes it hard for me to distinguish between things that are similar colors, such as sidewalks, streets, and people in dark clothing. To me, it all looks like a weird grayish blob that goes on and on. There is no correction, but good lighting and being well-rested helps—but I have to be careful that my good lighting isn’t too bright, because then my photophobia kicks in and it can stress out my eyes and make the auto-immune condition (see #9) worse. It’s the low-contrast sensitivity that makes it dangerous for me to drive (I haven’t driven in several years).
  9. An auto-immune condition that makes my eyeballs swell up and change shape enough that the prisms in my glasses that correct the hypertropia are no longer able to correct it, resulting in double-vision. The swelling is also uncomfortable and sometimes painful. There is no fancy name for my auto-immune condition—it just seems that my body sometimes acts like it’s allergic to my eyeballs. I don’t seem to have any other symptoms.

I also have halos around the edges of my vision (undiagnosed so far). On top of all this, I have another condition that isn’t actually a vision impairment but it seems like one: I have prosopagnosia, also knows as face blindness. I see faces just fine, but I can’t remember them—even my own face or my daughter’s face don’t stay in my memory. I recognize people by their gait, voice, glasses, clothing, or hair.

The combination of vision conditions, especially the last three, is what, in my case, constitutes low vision. Any one or two of those conditions alone might be just a “normal” vision problem, but the combination of hypertropia that gets worse when I or my eyes are tired, low-contrast sensitivity, and the auto-immune condition push me firmly into low vision territory.

I am more likely to experience double vision when I’m tired or I’ve been reading or writing a lot. I typically experience it several times a week in the evening, after a reading- and writing-heavy day, but at the end of the semester or when I’ve really been reading and writing intensely, I can have double vision that lasts for a few days. Right now, I am on day 11 of having double-vision. By experimenting, I’ve found that I can get about three hours a day of reading and writing in if I take breaks every 20 minutes. During my breaks, I do some eye exercises, use eye drops, and sometimes put a hot compress on my eyes. After about 15 minutes of a break, I try to read or write again; sometimes my eyes tell me they are good to go and sometimes they tell me to keep on breaking.

During the times when I can’t read or write, I can sometimes get some work done using voice dictation in words and the accessibility tools on my phone, but because I don’t use those tools regularly, I’m not very efficient with them yet.

I’ve also learned that my vision goes double from looking at someone during dinner, attending Zoom meetings, and watching TV, so it’s not just reading and writing that tire them out.

Over time, I’ll get more fluent with the voice dictation and accessibility tools. For now, I have added this note to my email signature:

PLEASE NOTE: Due to vision issues, I am relying on voice dictation and am unable to thoroughly edit or proofread right now. Please read with generosity. Thank you.

It’s important to me that I’m not asking for forgiveness or apologizing for my vision.

The complexity of my low vision is why it frustrates me when the retina specialist I go to (because with all my conditions, I’m at high risk of a detached retina) says, “Well, in a few years when your cataracts are worse, I’ll do surgery and restore your vision.” No, buddy, you won’t restore my vision. You’ll remove my cataracts and maybe reduce my nearsightedness, but I’ll still have seven vision conditions—and oh, yeah, there’s a possibility that your amazing surgery will kick my auto-immune condition into high gear.

Or when someone tells me I should try acupuncture, or a B12 supplement, or yoga, or whatever. Or when they suggest that I’m using my low vision as an excuse for get out of doing something. I’ve had to work really hard to eek out a few hours of work every day for the past 11 days. It doesn’t feel to me like I’m getting out of anything.

Like a lot of folks with disabilities, I just want people to believe me when I say I have a complicated vision situation and then move on.