Tag Archives: ableism

Accessibility + Dis/ability

You Are Not the Only Disabled Person at Work

In work meetings, in the classroom when I’m teaching, at social events, and at conference sessions, I often wonder if I’m the only disabled person in the room. Because disability is so often not apparent and it is seldom spoken about, even when I know there must be other disabled people in the room, I feel isolated and self-conscious about my differences. I feel unspoken pressure to mask my low vision.

That feeling of being alone is powerful. It has swayed me at times to not advocate for myself, convincing me that asking for fairly simple things like more lights on in the room or larger print on slides is disturbing the peace. I have felt shame that I alone want brighter light or larger print. And then often, after the event where I felt such shame, I have learned that others also thought it was too dark or the print on the slides was too small, but we all felt enough shame that we sat quietly in the dark, unable to read the slides.

Ableism and other forms of oppression thrive when the people being oppressed think they are alone. The more alone we feel in our oppression, the less likely we are to ask for help or accommodations.

I want to note that this feeling of being alone is not anyone’s fault. The isolation is a function of systemic ableism rather than of individuals trying to oppress me. Most of the time these days, when I do ask for changes in lighting, people are happy to make them. Most colleagues and presenters keep their grumbling to a minimum when I ask that they make their slides high contrast or use larger fonts.

But the good intentions of people do not make spaces, meetings, and presentations more accessible. The onus is often on the disabled person to educate others around them and ask for accessibility measures. Annika Konrad calls the resulting exhaustion access fatigue.

At last year’s International Writing Center Association conference, I attended the Disability Special Interest Group meeting. I looked around and saw people I had known for years who I never knew were disabled. Others I knew as disabled but hadn’t ever talked to them about disability. Simply being in a room full of other disabled people reduced my anxiety fatigue right there on the spot.

The following semester, I taught a class on disability rhetorics. The majority of students who took the class identified themselves as disabled to their classmates. Students commented many times throughout the semester on how profound it was to have a community of disabled peers. They said that for the first time in their lives, they didn’t feel shame and isolation. They didn’t worry about being the only person in the space with so-called “special needs.”

Seeing the impact of disabled community at the IWCA meeting and in that class motivated me to create a disabled employee affinity group on campus. An affinity group provides a safe space for disabled people to connect, share experiences, and support each other. Simply knowing you’re not the only one is empowering. Although I know logically that I’m probably seldom the only disabled person in the room, being part of a workplace affinity group helps remind me that when I ask for accommodations, I am helping other disabled people, too. I’m not the only one who benefits from brighter lights or larger fonts on slides. Instead of feeling selfish for requesting accommodations, I can understand what I’m doing as advocating for accessibility and inclusivity.

An affinity group makes disability in the workplace visible, both for current and prospective employees. The existence of the group is proof that disabled people work there. It tells disabled people considering applying for positions that they will have a community there. It provides a way for members to support each other, share experiences, and help others navigate the mysterious process of asking for official accommodations.

One aspect of workplace accommodations that is shrouded in mystery is what can you ask for? Many folks don’t know what kind of accommodations you can ask for besides ramps and sign language interpreters. An affinity group provides a space for members to talk about what their accommodations are and how they got them—or how inadequate their accommodations are and how to get more impactful ones.

In a culture that prizes independence, disabled community provides interdependence without shame.

Accessibility + Dis/ability, caregiving

How to Support Someone Looking for a Diagnosis

Last week I wrote about why getting a diagnosis can be so difficult: it can be expensive in terms of both money and time, and patients and doctors don’t speak the same language. On top of that, there’s a social cost: someone who is trying to get a diagnosis is often dismissed by friends and coworkers as a hypochondriac or faker.

If someone you know is trying to get a diagnosis and they’ve had to go to more than one appointment or have more than the usual blood and urine tests, they are likely frustrated. They may be stressed out about how much money, time, and energy they are putting into the process. They may also feel lonely. Looking for a diagnosis can alienate someone from people they used to be close to.

When I was having what turned out to be brain bleeds before my arterio-venous malformation (AVM) was diagnosed, I was lucky to be surrounded by people who supported me. My boss and co-workers didn’t question whether I was really experiencing the brutal headaches I described, even though they didn’t see me when I was having a headache. My then-husband encouraged me to keep seeing doctors, even when we didn’t have insurance and it felt like we couldn’t afford it.

No one was questioning me besides the doctors I was seeing, but I still often felt alone. I had seen and heard lots of questioning of other people about their symptoms. For example, my grandmother had many medical issues and her husband and son regularly questioned “how real” her symptoms were since doctors weren’t diagnosing anything. They groaned audibly whenever she mentioned a stomachache or headache. When guests came over, her husband would say, “Please don’t ask her how she feels!” with a roll of his eyes.

Growing up with this allowed me to internalize the message that doctors know our bodies better than we do. Whenever one of the headaches or smell reactions came about, I had an argument in my head: one voice asking me, “Are you sure this is happening?” and another one saying, “Yes!” But no matter how emphatic the “Yes!” was in my head, there was always that second voice, gaslighting me, making me wonder, was I just weak? Did everyone have headaches like this but I was the only one complaining because I was pathetic?

Chances are, your friend looking for a diagnosis feels some shame about their search. You can help alleviate some of their feelings of being alone. Try this:  

  1. Believe them. Even if you have had very different experiences with pain, memory, mobility, organ function, or whatever, understand that your experiences are not universal. It’s fine to ask questions for better understanding, such as, “Have you noticed any triggers for the issue?,” but don’t question whether your friend’s experience is real. It’s very likely that your friend’s concerns are being minimized or even dismissed by healthcare providers. Your job as a friend is to validate their experience and support them in the difficult process of getting a diagnosis.
  2. If you’re able to, offer to accompany them to appointments. Having someone else there to listen and simply silently support can be helpful. When I was trying to get my vision issues diagnosed, my husband came with me to an appointment; being able to talk with him afterwards about what the doctor said helped me clarify my next steps. If you live far away, your friend might be able to have you “Zoom” into the appointment.
  3. If you’re not able to accompany them to appointments, you might offer to run errands for them, pick the kids up from soccer practice, or do something else to offset all the time and energy they are putting into healthcare appointments.
  4. Ask what would be helpful. If you’re not sure what they need, you can ask. “How can I help?” is a great question and much better than “Let me know if I can do anything,” which is very close to useless. You can also ask questions like, “Do you want to be distracted or do you want to talk about this?” Don’t assume you know what’s best.
  5. Aim to support, not solve their problem. Hold space without suggesting what you would do (unless they ask you).
Accessibility + Dis/ability, Aging

Why Getting a Diagnosis Can Be So #^&! Hard

In my mid-20s, I started having sudden blinding headaches sometimes accompanied by vomiting, confusion, and slurred speech. I also had weirdly intense reactions to familiar smells. I didn’t know if the smell reactions were related to the headaches and I couldn’t figure out what was triggering the headaches. I didn’t have health insurance and couldn’t afford to miss work, so I just hoped really hard that the headaches wouldn’t hit while I was at work.

The one time a headache hit at work, I was alone, closing up the restaurant I worked in. I lurched around, doing my best to complete the end-of-day tasks and then stumbled to the bus stop, where I vomited before boarding my bus. When I got home, I called my boss to tell her I hadn’t been able to close up properly because of a health scare. She was sympathetic, and having been diagnosed herself with a rare disorder, she encouraged me to see a doctor and pay out of pocket.

By the time I saw the doctor a few days later, I wasn’t having a headache and I appeared fine. He seized on the date of my last period. PMS, he said.

“What about the smells?” I asked.

“Probably unrelated,” he said with confidence. I felt stupid for having mentioned them.

“This isn’t like any PMS I’ve ever had before,” I argued weakly.

“PMS doesn’t show up the same way every time,” he said. “We could do a spinal tap, but it probably wouldn’t show anything. And it would be expensive and painful.”

I went home to my husband, embarrassed that I had spent money we didn’t have to learn I had PMS.

Six months later, I had health insurance. The headaches and smell sensitivity continued. I mentioned the symptoms to my new PCP, but he wasn’t impressed. Was there a reason I didn’t trust the diagnosis of the first doctor? he wanted to know.

“I looked up my symptoms in a book I have,” I explained. I had bought the huge paperback compendium of medical symptoms a few years earlier but tried to not take it seriously when it suggested I could have a brain tumor. “It’s probably not a brain tumor, but . . . “ I suggested, avoiding eye contact.

“Those books are dangerous,” my PCP snapped. “Everyone comes in here thinking they’re an expert.”

“I know I’m not an expert,” I acknowledged. “But the headaches don’t seem to be connected to my cycle. And they’re so sudden and severe.”

We were at a standstill. I had given the best argument I could come up with and he was unmoved. “Come back if you have another headache,” he said with a shrug.

On January 26, 1997, I had another headache. I was at home with my husband and sister. When I began slurring my words as I argued with them that I was fine, they called 9-1-1. By the time the ambulance arrived, I couldn’t control my arms or legs.

It wasn’t PMS. For two years, I’d been experiencing brain bleeds caused by an arterio-venous malformation (AVM). When it went untreated, the bleeding escalated until I experienced a catastrophic brain hemorrhage or hemorrhagic stroke. The AVM was adjacent to the olfactory cortex, which is why I was having intense reactions to smells.

I spent five days in a medically-induced coma and another two weeks recovering in the hospital and at home. My doctors in the hospital told me that young people who have hemorrhagic strokes typically die immediately or recover quickly. I did both, having a near-death experience in which I left my body and then recuperating enough that I returned to work two weeks later.

My story is a great example of how difficult it can be to get a diagnosis and why I am frustrated that our culture puts so much value on diagnosis. People with conditions that haven’t been diagnosed are considered hypochondriacs, fakers, or snowflakes. People searching for a diagnosis through multiple doctors are called doctor shoppers. But as my story shows, getting a diagnosis can be complicated by many factors:  

  • It can be expensive. Not having insurance kept me from going to a doctor sooner and kept me from finding another doctor when I didn’t like the way the first one treated me, but even if I’d had insurance, co-pays can add up, and insurance doesn’t cover everything. I have a friend who has insurance who was recently diagnosed with autism; their insurance doesn’t cover autism evaluations, so my friend had to pay out of pocket.
  • It takes time. The appointments themselves take time; my recently-diagnosed friend, for example, had to take a full day off work for the autism evaluation in addition to having multiple one- and two-hour sessions with the evaluator. Sometimes simply locating the right doctor to see takes a long time, or symptoms may show up sporadically and seeing a doctor when the symptoms aren’t present makes it harder to describe them.
  • Doctors don’t typically have time for or interest in the kinds of in-depth conversations that many diagnoses require. The two doctors I’ve had experience with who entertained in-depth conversations typically ran two hours or more behind schedule, which makes appointments with them harder to book and take more time.
  • Patients don’t describe what they are experiencing in language doctors are trained to expect. The ludicrous “pain scale,” for example, assumes everyone experiences pain the same way. When I was trying to get my daughter diagnosed with asthma and I said she was wheezing, the doctor said “wheezing isn’t what people think.” Later, after my daughter was diagnosed with asthma, the doctor admitted that my daughter wheezed and said that my use of the proper term was unexpected enough to throw her off. WTF? Using the wrong term is a problem and apparently using the right term is also a problem.  
  • Medicine is an evolving field. Doctors don’t know everything and there are many aspects of our health that are misunderstood or barely understood. For a thought-provoking discussion of where medicine might be headed, I recommend Peter Attia’s book, Outlive.
  • Patients are socialized to not disagree with doctors. I’m an assertive, strong-willed person, and I often feel internal pressure to not push back against what doctors are telling me, even when I know they are wrong.
  • Oppression is systemic. Women, people of color, and people with disabilities are already disadvantaged, but then factor in that most medical research assumes a male, white, non-disabled patient and accepted lists of symptoms and treatments may be wildly inaccurate.

Next week, I’ll talk about how you can support a friend who is trying to get a diagnosis.

Accessibility + Dis/ability, caregiving

How to Talk with Disabled People

Before his stroke, my husband was the kind of man to walk into a room and instantly own it. People deferred to him because of his confident swagger, his understated confidence, and his uncanny ability to cut through bullshit without shaming the bullshitter.

After his stroke, when he used a wheelchair, spoke slowly, and experienced confusion, disorientation, and memory lapses, it broke my heart to see how differently the world treated him. His friends and loved ones didn’t treat him any differently, but the doctors and medical professionals we saw on a regular basis often spoke to me rather than him. Many receptionists would look right past Tom and ask me, “Who are you checking in?”

I tried to redirect the conversation. For example, if a doctor asked me how a prescription change was working for Tom, I would say, “Tom, what do you think of the new prescription?” Sometimes the doctor would take the hint and start talking to Tom but often I had to continue redirecting questions to Tom throughout the appointment. It was a constant battle to get many of the medical professionals to address him directly.

He did have a few wonderful health care providers who were very respectful. His neurologist, in particular, always spoke directly to Tom, listened carefully without rushing him, and asked clarifying questions to make sure he understood what Tom was telling him. His physical, speech, and occupational therapists all addressed him and made an effort to get to know him.

Other health care practitioners were sometimes shockingly disrespectful. I remember one who pulled Tom’s pants down to give him a shot in his knee without ever speaking directly to Tom or telling him what he was about to do. I was so taken aback I couldn’t collect myself quickly enough to say anything, and I apologized profusely to Tom for my failure to say anything. It was a constant struggle.

This struggle is why I was so excited to come across a video produced by the Special Olympics called “How to Speak with People with Disabilities.” The video focuses on people with intellectual disabilities but the basic advice it puts forth applies to people with any type of disability.

The video features several people with intellectual disabilities talking about how they want their health care practitioners to interact with them. They mention that they want their health care practitioners to get to know them, to make eye contact with them, and to talk to them rather than their caregiver. These are basic practices I would hope any medical professional would use with any patient, with or without disabilities, but I know from my own experiences and those of my husband that it doesn’t happen often enough.

The video emphasizes talking with people with disabilities rather than talking to them. That preposition is crucial: talking to people positions the health care practitioner as an expert imparting information to a patient, while talking with people positions the health care practitioner and the patient as partners and equals.

Any time you talk with a disabled person, give them the same respect you would give anyone else. Treat them with dignity. Speak to them, not their caregiver. Get to know them. This goes for faculty talking with disabled students, health care practitioners talking with disabled patients and clients, and anyone else communicating with a disabled person.

Accessibility + Dis/ability

When the Door Opens for Everyone but You

Imagine a new friend invites you to a party at their house. When you arrive, you knock on the door, but nobody answers. You try the door but it won’t open. You step over to the sidewalk to check that you have the address correct. From the sidewalk, you notice other people arriving and having no trouble getting in, but when you return to the door, it won’t budge for you. You text your friend, but they are probably busy greeting guests and don’t respond to your message. Finally, you decide to ask the next person arriving to hold the door open for you but when you do, they say, “Well aren’t you high maintenance?” They were probably joking, you tell yourself, but before you can respond, the door has swung shut again. By this time, you feel very dejected, not to mention worn out from pulling and pushing on the door. You are now in no mood to socialize. You go home, wondering what just happened.

The next day your friend texts you, apologizing for not seeing your message the night before. You are still too confused and exhausted from the experience to have a conversation about it, but the next time you see your friend, you explain that you tried to get in but couldn’t open the door. They look at you with confusion. “Nobody else had any trouble,” they say. “Why didn’t you ask for help?” You want to explain that you did, but you’re already feeling a bit foolish, so you just let it go.

You might laugh off this odd occurrence if it happened only once. Now imagine that this happens every day, everywhere you go: at work, at the grocery store, at restaurants, at school, at church, at the homes of every friend and family member. Nobody else seems to have trouble getting in. It’s just you.

This is what it’s like for a disabled person trying to access spaces that are designed with only non-disabled people in mind. You can take this basic metaphor and extend it in different ways to understand the experience of a disabled person. For example, as a vision-impaired person, I can usually get into a space but then I often can’t access what’s happening in the space because the signs, slides, handouts, etc. aren’t visible to me. A neurodivergent person may, like me, be able to physically enter the space, but then may find the social cues others notice to be invisible to them.

It’s frustrating and confusing. When I first can’t see what others see, I often don’t even know they see something I don’t. I sometimes wonder how everyone else knows where to go for a meeting—it often turns out there are signs that I don’t see. Asking for help is often unproductive because I don’t know what I’m missing so I don’t know what to ask for. Or, like the person who asks for help getting into the party and is met with a sarcastic response, my requests for help are greeted with snide comments because my disability isn’t apparent. (I am so tired of people pointing at signs I can’t read when I ask for help!)

As my hypothetical scenario shows, there’s no malice on the part of the friend who throws the party or even the people who don’t help. They are just oblivious to the plight of the person who can’t get in. But the lack of malice doesn’t make the situation easier for the person who can’t get in.

Last week I spent a few days in Washington, DC, doing research related to disability at several national sites. I saw lots of gestures toward accessibility that I appreciated—and yet, the doors still don’t open easily for everyone.

The National Mall: I was surprised to learn that the FDR memorial is the only one of the 100+ memorials and monuments on the National Mall to include Braille on some of its exhibits. All of the memorials and monuments have brochures in Braille available and are wheelchair accessible. A park ranger explained that the FDR memorial includes Braille as a nod to FDR being disabled himself. (I was surprised at how powerful it was to see the statues depicting FDR using his wheelchair—I’ve seen wheelchairs in photos, but I don’t think I’ve ever seen one in a statue.)

As much as I appreciated the availability of Braille brochures at the sites, every time a disabled person has to ask for accommodations, they are the person trying to get into the party at the house where the door seems to open for everyone but them. That feeling of not being able to get into the house where the party is compounds over time. Asking for a brochure isn’t a big deal. Having to ask for a brochure constantly, day after day, wears a person out. Annika Konrad calls this being worn out feeling access fatigue.

Gallaudet University: Another day I went to Gallaudet University’s National Deaf Life Museum. The museum itself was very thought-provoking, especially the exhibit on HIV/AIDS and the Deaf community. The title of the exhibit was “Left Behind” and it focused on how Deaf people didn’t have access to information about HIV/AIDS during the epidemic.

The museum is in a beautiful campus building that exhibits the traditional academic architecture Jay Dolmage talks about in Academic Ableism. From the front, it appears the only way in is up a foreboding set of stone steps. I walked around the building looking for a wheelchair accessible entrance out of curiosity and did find one, but there was no indication at the front of the building where to find the accessible entrance. A person using a wheelchair would likely need to ask a random passerby for help finding it.

I want a world in which the doors open for everyone, but I wonder if it’s even possible. Surely it would be possible to put an attractive and high contrast sign in front of a building indicating where the accessible entrance is—or better yet, make the main entrance accessible. Design Braille into the next monument. Find ways to prop the doors open.

Accessibility + Dis/ability, anxiety, grieving

Recognizing Internalized Ableism on My Anniversary

Today would have been my anniversary with Tom. Today IS my anniversary with Tom. My inclination is to write the first sentence because I am no longer his wife, but I realize that whether he’s dead or alive, today IS the date we got married in 2011. There is much that was and much that still is. My love for him and the life we had together is just as strong as it was when he was here to celebrate with me. But that life is a memory now, and as much as I love the life I am living now, it is not a life with Tom.

I was at a conference last week and knew my anniversary was coming up, but lost track of which day it was. My return flight yesterday got significantly delayed and I ended up not getting home until after midnight. After crawling into bed, I was almost asleep when suddenly I realized that because it was after midnight, it was my anniversary.

That realization, on the heels of a long travel day, kicked off my anxiety and big tears. My mind kept going back to our last anniversary together, after his stroke and just a few months before he died. We went to one of our favorite restaurants and they were woefully unprepared to greet a guest using a wheelchair. The next morning over brunch, Tom took my hand and apologized for not having understood the challenges of my being disabled.

It was an incredible acknowledgment. The last few years, he had been incredibly supportive but when I first started mentioning that my vision didn’t seem right, he was skeptical. Like many people in my life, he wondered if I was exaggerating things or just not trying hard enough to see. Especially when my disability inconvenienced him, he would ask me if I was really trying. It was maddening for both of us.

I finally understood at some point that he hadn’t not believed me but that he hadn’t been ready to accept that I was going to have to deal with the challenges of a disability for the rest of my life. I noticed a similar resistance in myself when Tom’s doctor told me there was a high likelihood that Tom would never walk again. My immediate response was that of course Tom would walk again because I knew he would work hard in physical therapy.

But no matter how hard he worked, walking unassisted was out of his reach. I kept thinking he just had to work a little harder, but even as I had that thought, I knew it wasn’t accurate. All of his physical therapists were astounded at how much progress he made and how hard he did work. It wasn’t about hard work—it was about the stroke having knocked offline the part of his brain that handled his left side. I saw the MRI images and the massive infarct, the technical term for the brain tissue killed by the stroke. Two-thirds of one hemisphere of his brain just didn’t exist anymore.

Even knowing it wasn’t about how hard he worked, my own brain kept grasping at the idea that if he just worked a little harder, maybe, maybe, he would walk again. I realize now that that’s the line of thinking he followed when he wondered if I was trying hard enough to see.

This is what internalized ableism looks like: me wishing my husband would work hard enough to walk again, him wishing I would try hard enough to see what he saw. The line of thinking might originate with optimism and hoping for a “positive” outcome, but there are at least two big problems with that rationalization. First, it attributes the desired outcome with hard work and less than the desired outcome with not enough work, and second, it assumes that walking, in my husband’s case, and what is considered normal vision, in my case, are the only outcomes that can be judged successful.

On this anniversary, I miss everything about that man who used a wheelchair, including his wheelchair. His physical and occupational therapy sessions were often team efforts, with both of us working together to get him somewhere or accomplish a task together. It helped us realize in a concrete way that we were always on the same team. We hated the stroke and the pain it caused Tom, but it opened up some opportunities for us to communicate better and become closer.

I celebrated this anniversary by sleeping in, being gentle with myself, and sharing memories with my daughter. I went to Tom’s bench and talked to him for a bit. I got a few emails and texts from loved ones, acknowledging the anniversary, which I appreciated. I felt lucky to have had such a great love and proud of the life I am living now, which was shaped in so many ways by my relationship with Tom.  

Accessibility + Dis/ability

The Real Reason Why Going to Conferences Is So Exhausting to Me

I came home this weekend from two back-to-back conferences in Chicago that left me exhausted. I only spent one full day at each conference, so I shouldn’t be that tired, but navigating conferences as a disabled person takes a lot of stamina. This is true even though accessibility gets talked about a lot more now than just a few years ago and academic conferences seem to all have accessibility guides.

The accessibility issues I ran into happened even though everyone I interacted with was kind and meant well. Many people helped me in different ways. But people’s good intentions and my positive attitude don’t make the world more accessible. As Stella Young put it in this fantastic TED Talk, “No amount of smiling radiantly is going to make a staircase turn into a ramp.”

Things started off a bit tricky, with a flight delay that caused me to arrive at my hotel after dark. With no natural light coming in, I bumbled around my hotel room, having to rely on the inadequate lamps. I have described before what I like to do when I first arrive in a hotel room to make it accessible; with it being dark outside, I wasn’t able to do everything I like to do until the next morning. Luckily, the room did have better-than-I’ve-come-to-expect lighting by the bed, but much of the room was just a shadow to me until morning and I have the bruises on my hip where I walked into the dresser to prove it.

The bigger challenge was navigating the conferences themselves. The first conference was an International Writing Centers Association event at DePaul University in a space that was well-lit, but the room numbers were tiny and hard to find. I had to walk up to each room’s door, locate the sign, and put my face an inch or two from the sign to find the room number. Luckily, other conference participants were kind about noticing my trouble and helping me find the rooms I needed; but the stress of frantically trying to find presentation rooms made me feel worn out by the time I got into the right rooms.

 The conference session themselves were excellent, but the accessibility was not. Despite the IWCA having a top-notch accessibility guide, speakers used the microphone and provided printed scripts in only one of the three sessions I attended. In the other two sessions, presenters had no handouts and did not use the microphone. One of these sessions was a roundtable in an auditorium, so the sound just disappeared into the ether. Normally I would have asked the speakers to use a microphone, but there was some confusion at the beginning of the session and by the time I realized speakers weren’t going to use the microphone, I would have had to interrupt the proceedings quite awkwardly. In hindsight, I wish I had done just that, but in the moment, I was discombobulated.

The second conference was the Conference on College Composition and Communication at the Hilton Chicago. I encountered so many unexpected steps and tripping hazards there that by the time I headed home, my neck hurt from looking down to watch my step. The room numbers were just as challenging to find as they had been at DePaul, with the added twist of seemingly random placement of room number plaques. At least at DePaul, all the room number plaques were to the right or left of the doors and looked similar; at the Hilton, some were to the left, some to the right, some above, and some I never found. Some plaques were electronic and others were not. Some had high contrast and some did not. Plus instead of room numbers, the rooms had names, so there was no internal logic; while I know room 5 is likely to be beyond room 4, where might the Lake Ontario room be in relation to the Buckingham room?

Finding room numbers was frustrating, but the surprise elevation changes with unmarked steps were truly treacherous. In one of the conference spaces, there were at least two little sets of 2-3 steps that almost killed me. Both were carpeted and blended in with the surrounding flooring. After almost tripping down each one, I turned to get a good look at them. One set did have a gray stair marker that I could see after the fact; the carpet was blue and gray, so the gray stair marker didn’t stand out and thus, didn’t really do the job it was supposed to do. This is a great example of focusing on legal compliance without considering the real purpose of accessibility: to make a space safe and navigable by a person with a disability.

I entered each room completely frazzled. Like the IWCA conference sessions, the Cs conference sessions were a mixed bag in terms of accessibility. Cs also has an excellent accessibility guide; still, speakers in only three of the four sessions I attended used the microphone and speakers offered scripts in only two of the four sessions. Slides in all the sessions were illegible to me, but I suspect part of that is because the projection screens were smaller than speakers may have anticipated and often positioned awkwardly so that not everyone in the room had a clear view of them.

Both of these conferences relate to literacy and the teaching of writing. The presenters are people who value reading and communication, and yet, clearly, a large proportion of them have not read the wonderful accessibility guides available to them.

My plea to people who give presentations:

  1. Read the accessibility guide. If the conference planners have created an accessibility guide, read it and follow the guidelines in it. If you don’t know how to do something the accessibility guide recommends that you do, learn how.
  2. Use a microphone. I understand why people don’t use a microphone. If you’re not used to speaking into one, it can feel awkward. But in 2023, if making presentations is part of your job, then you need to get comfortable using a microphone. Consider it part of your professional development.
  3. Create accessible slides. When you create your slides, assume that the presentation situation will be less than ideal: the room’s lighting won’t be great, the screen will be smaller than you’d like and farther away from participants than you’d like. And for the love of whatever you hold dear, please observe the rule of 5. Again, if you are not good at creating accessible slides, consider it part of your professional development to get good at it.
  4. Make a script available to participants. Yes, I know, it uses paper and is a bummer to have to have your presentation written up in advance rather than writing it feverishly the night before. Again, part of being an academic professional these days means making your materials accessible.
  5. Advocate for accessible conference spaces. If you have anything to do with planning a conference, ask pointed questions of the host facility about accessibility. How will folks who use wheelchairs access spaces? How will vision-impaired folks find rooms? How will hearing-impaired folks hear presentations? Where can folks go for a quiet space if they are over-stimulated? And have a back-up plan in case ASL interpreters call in sick or get stuck in traffic (this is another great reason for presenters to have scripts available).
Accessibility + Dis/ability, anxiety

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.”

Accessibility + Dis/ability

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.

grieving

Say “uses a wheelchair” rather than “in a wheelchair”

After his stroke, my husband used a wheelchair to get around. The stroke left him paralyzed on his left side and although he was able to walk a few steps with a lot of effort and sometimes with assistance, getting around in a wheelchair was more efficient and less tiring.

More efficient and less tiring, but still a lot of work. The stroke destroyed a large portion of his brain and so he spent hours every week in physical therapy and then on his own working to retrain his brain to coordinate movements that used to come naturally and to recognize signals from parts of his body his brain had forgotten. To learn to sit upright in the wheelchair, he practiced sitting up straight in front of a mirror, developing core control, noticing when he was slumping to one side and using trial and error to activate the muscles necessary to straighten himself out. Once he was able to sit up straight in the chair, he had to learn how to get from the bed or another surface to the wheelchair, how to transfer his weight in ways that wouldn’t potentially cause a fall or injury, and how to work as a team with a person assisting him (that was usually me). He had to train his brain to remember to check that the chair’s brake was on or off and to make sure his paralyzed left arm wasn’t in a position where it could get tangled in the wheel or smashed against a wall if he rolled too close to it.  

To get around in the wheelchair, he had to learn to maneuver around people, objects, obstacles, pets, cords, divots in the sidewalk, and obstructions that a person with two functional legs could easily negotiate by straddling, hopping, or stepping over. The world is built for ambulation on two legs; successfully using a wheelchair to navigate a world not built for it is much more complicated than walking.

I know how much effort it took Tom to get around with the wheelchair and it makes me wince to hear that immense effort swept aside with a common phrase: “He’s in a wheelchair.”

My husband’s physical and occupational therapists, his doctors and nurses, his family and friends, used this phrase regularly. Every time I heard it, I winced a little. It minimizes everything about the human being sitting in the chair. It puts the focus on the machinery of the chair, perhaps the requirement of a caregiver or attendant. It renders invisible the person sitting in the chair.

Notice how differently these two sentences hit you:

  1. During the last year of his life, my husband was in a wheelchair.
  2. During the last year of his life, my husband used a wheelchair.

In the first sentence, my husband does nothing. There’s actually no action at all in the first sentence. Nobody does anything. It’s boring, implying a boring life and a boring person. If I were to follow this sentence with how much I loved him, you would have been prepared by the first sentence to hear my declaration of love as tinged with pity.

In the second sentence, my husband does something. There is action. He is the boss in that sentence. When I tell you after that sentence that I loved him, you’re much more likely to take it as a love that includes admiration, respect, and passion.

The simple word choice has an effect that ripples out to color the sentences that follow and impact your understanding of everything else I tell you about my husband.

When we say someone “is in a wheelchair,” we’re framing the wheelchair as a state of being, like being in a funk or in a mood. Conversely, when we say someone “uses a wheelchair,” we’re framing the wheelchair as a tool. Because the words we use impact the ways we see the world, a phrase like “in a wheelchair,” which obscures the agency of the person in the wheelchair, is a sneaky way ableism slides unnoticed into our speech and thus our worldview.

“In a wheelchair” implies that someone can’t do anything for themselves, that they are a burden with no agency. It erases all the hard work of navigating a world that is not designed for you. It is easier to leave someone out of an equation when we say they are “in a wheelchair.” On the other hand, “uses a wheelchair” acknowledges that a person can learn a new technology and navigate complex situations. Notice the difference between saying “we can’t hire someone in a wheelchair for this position” versus “we can’t hire someone who uses a wheelchair for this position.” In the first example, no further explanation is needed—of course you can’t hire someone who is a burden with no agency. But the second example does require at least a bit more explanation—why can’t someone who uses a wheelchair do this job?

I admit, I sometimes use this phrase. I’ve heard it so often that it occassionally rolls off my tongue without me even realizing I’ve said the dreaded phrase. But when the person in the wheelchair was the love of my life, whose effort was viscerally apparent to me, I learned how viciously unjust the phrase is. It sweeps aside all the effort, humanity, and agency of the person using the chair.

I know people who use this phrase are, like me, using it unreflectively. They are not issuing judgment on anyone. They mean no harm. They are speaking from a place of sympathy. But the language still does harm, whether the speaker intended it or not.

It’s a pretty easy switch to replace “in a wheelchair” with “uses a wheelchair,” and it will make a difference in how you see people who use wheelchairs.