Category Archives: Accessibility + Dis/ability

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

Shorter Days Bring Disability Worries

Colorado, where I live, officially has four seasons, but for me, there are two seasons: light and dark. My low vision is a complicating factor all the time, but when there’s more darkness in a day than light, I am in a constant state of anxiety.

Around this time of year, when the days start getting noticeably shorter, I shift from appreciating the crisp autumn air and beautiful fall colors to dreading the dangers that come with more darkness for me.

Darkness is coming. Like a character in a fantasy drama series, I have that thought with a shudder when the leaves start turning.

I start making mental notes during the day about the uneven sidewalks on my block and the construction zone near my usual bus stop so I can avoid them in the dark. I try to remember where the tree branches hanging low enough to hit me on my walks with the dogs are, knowing I won’t see them when I walk the dogs at night.

When the days are long, I love walking the dogs and look forward to our jaunts. But from now until the time change in March, at least one of their walks will take place in the dark and I will breathe a sigh of relief when I make it safely back home. My late husband gave me a headlamp to wear when I walk them in the dark, which helps, but not enough to make me feel confident of where I’m stepping. Also, because I am sensitive to bright light, sometimes the illumination of the flashlight hurts my eyes.

Every year when we change our clocks in March, I breathe a sigh of relief. I survived another dark season. I prefer the weather of the dark season but the dark itself sucks so much energy from me. The fear of not knowing what I can’t see weighs on me a little more heavily each year.

Mental health conditions, like Seasonal Affective Disorder and depression, can become more intense when light is limited. I know a lot of people who say their depression and anxiety get worse around the winter holidays, with the pressure of mandatory cheeriness and expectations of increased socializing. If you’re grieving, the holiday season may make you miss your loved one more intensely.

And it’s not just the increased stretches of darkness that make the dark season challenging for people. The cold temperatures that typically come with darker seasons can trigger symptoms of many neurological conditions, as well as asthma, multiple sclerosis, and arthritis.

The dark season was more treacherous for my husband after his stroke, too. Pushing a wheelchair through snow or over ice is tough. One time my mother-in-law had to push me while I pushed his wheelchair up an icy ramp—otherwise the wheelchair and I would start sliding back down. Slush would clog up the wheelchair’s wheels. Melting snow created frigid puddles that we couldn’t navigate around.

As we head into another dark season, I hope you’ll give yourself and others grace. There’s a lot to love about the dark season; I’m a devoted fan of hot chocolate, snuggling under a thick blanket, holiday music and festivals, and the glittery look of fresh snow. But for many of us, the dark season comes with an extra dose of struggle.

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, normalizing what should be normal

What Disability-Affirming Looks Like (and why it matters)

I hate everything about the concept of overcoming disability. I understand that typically when people talk about someone having overcome a disability, they mean it as a compliment. I’ve heard people talk about how FDR overcame his polio to become president, how Helen Keller overcame her blindness and Deafness to communicate, how Simone Biles overcame her mental health challenges to kill it at the Olympics.

I admire FDR, Helen Keller, and Simone Biles for their accomplishments. But to say that they overcame their disabilities relies on the assumption that being disabled is intrinsically a barrier to success. It supposes that a disabled person shouldn’t be able to become president or a celebrity speaker or a decorated athlete and that it takes an individual with unusual strength, determination, or fortitude to do anything remarkable. It assumes that it is remarkable enough for a disabled person to simply live life, let alone become a leader of any sort. It attributes only negative values to disability—and by extension, disabled people.

To overcome is to defeat or take control of. I cannot defeat or take control of my disabilities. All the willpower and strength in the world will not help me see any better or be less anxious. The overcoming attitude assumes disability is a tragedy, something shameful or pitiful. This is the attitude that assumes I would do anything to fix my vision problems.

The late Nancy Mairs, who wrote about life with MS, said, “I would take a cure but I don’t need one.” I’d love to have better vision or to say goodbye to anxiety and depression, but living a life with low vision, anxiety, and depression is apparently my only option, and damn it, I’m going to make the most of it.

I prefer disability-affirming. I see the overcoming concept as directly opposed to affirming. Overcoming disability puts all the responsibility on the person with the disability. Disability affirming recognizes that disability may make life more challenging but it isn’t a tragedy that makes life not worth living. It sees disabled people as equal to non-disabled people, not less than. Instead of arranging people into hierarchies with non-disabled always higher and more desirable than disabled, a disability-affirming approach understands disability as a feature of the normal range of ability. When someone is recognized as having more challenges, a disability-affirming approach does not expect that individual to be the only one working hard—rather, it sees the work as a joint effort between the disabled person and those around them.

An excellent example of disability-affirming is the Phamaly Theater Company, a company of actors with disabilities formed in 1989 in Denver. Over the weekend I saw Phamaly’s performance of A Chorus Line. Every actor in the production was physically, emotionally, cognitively, and/or intellectually disabled.

An overcoming disability approach would have meant that disabled actors in a show like A Chorus Line, which centers on a group of actors auditioning for a place on a chorus line, would need to either overcome or mask their disabilities. An actor who uses a wheelchair or is Deaf or has a condition that makes it impossible for them to stand for the length of a scene wouldn’t even be considered.

But in Phamaly’s A Chorus Line, actors who use wheelchairs move to the beat of the music, Deaf actors have another character sign and interpret for them, an actor who can’t stand for long periods sits on a wheeled stool and spins around the stage. The disabilities are seamlessly integrated into the performance as if being disabled is normal—and it is! The disabilities don’t become a focus or a barrier—they simply are. Just like in real life.

Affirming disability takes away the pressure disabled people often feel to hide their disabilities. A disabled person who is masking puts tremendous pressure on themselves to appear non-disabled and it is done out of shame or embarrassment. When I pretend I can see something I can’t, I’m masking, and I do it nearly every time someone shows me a picture on their phone. Between the small screen, the typical glare, and my low vision, nine times out of ten, I can’t make out anything, but instead of admitting that and shifting the focus to me from whatever the person with the phone wants to show me, I smile real big and exclaim, “Oh, look at that!” It feels harmless in the moment.

But then I feel like a fraud and the next time that person shows me something on their phone, they think I can see it because I’ve created the illusion that I can and it becomes harder to admit the truth.

A disability-affirming approach that I could take would be to say from the very beginning, “I would love to see that picture! It’s going to take me a minute to change my glasses and move out of the glare, but I’m sure it will be worth it!”

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

I Don’t Recognize Myself in Photos (Life with Face Blindness)

About 10 years ago, a friend mentioned meeting someone at a conference who couldn’t see people’s faces. This person couldn’t tell TV characters apart, didn’t recognize herself in photos, and walked past her loved ones in public without realizing it. My friend said this person’s condition was called “face blindness.”

First chance I got, I googled face blindness, officially known as prosopagnosia. Little is known about the condition, although there is a research center affiliated with Harvard University. The more I learned, the more I was certain that I had it, too.

I’ve had it my whole life, but didn’t know that the way I saw faces was different from how others do. Actually, for me, face blindness doesn’t keep me from seeing faces exactly, but it does keep me from understanding them as a whole and from remembering them. That probably makes no sense if you don’t have face blindness, so I’ll explain it another way.

I can see a nose, a mouth, eyes, and a jawline, but when I look at a face, those components don’t stay steady for me. I may see a jawline but not be able to make sense of the nose. I may see the eyes but they seem to move around the face. To me, faces look very much like faces in Picasso’s paintings do. I didn’t understand why Picasso’s work was considered that interesting until I realized that I don’t see faces the way most people do. (In fact, there’s a theory that Picasso had face blindness.)

As far as being able to remember faces goes, I can see a face in front of me just fine and recognize it as a beautiful face or an interesting face but when I turn away, I have no memory at all of the face. When I turn back, it’s as if I’m seeing the face for the first time. I memorize aspects of people’s faces so it can appear that I remember faces, but it’s really that I’ve memorized that one friend has a heart-shaped face and another has full lips that form a perfect V shape at the middle of the upper lip. I might remember that someone wears distinctive glasses or has a nose piercing or has dramatic eyelashes.

I recognize people by their gait, voice, glasses, posture, clothing, or hair rather than by their face. I know I love my daughter’s face and find it beautiful, but I can’t describe it to you. When I used to pick her up after school, I saw kids streaming out of the school building, knowing one of them was mine but unable to say which one. I recognized my husband by his shoulders and the fact that he often wore Carhartts.

I’ve always had trouble recognizing people when they are wearing a hat, in a different context, or they’ve changed their hair. I’ve developed a lot of habits to offset these challenges. When I’m meeting someone at a restaurant or coffee shop, I try to arrive first and be seated so they’ll have to find me. I’ve had too many embarrassing incidents in which I walked right past the person I was meeting and got my own table near them.

My whole life, I’ve been accused of ignoring people in public. Many times in high school, a friend would claim I had looked right at them in a public setting, like the mall or library, and ignored them. I always said I hadn’t seen them, which was true—but it was weird to me that this was such a common accusation. I hated the cafeterias in high school and college because I’d get my tray of food and then look out into a sea of strange faces.

My inability to recognize faces leads to social awkwardness on a regular basis. When someone who had been my neighbor for ten years started working at my university and I introduced myself to her as if we had never met. Another time, a male colleague changed his facial hair and I introduced myself to him and welcomed him to the department. Once I hugged a man in the grocery store wearing Carhartts and nearly kissed his arm before he told me he was pretty sure I was confused. A guy I went on a date with was upset to learn his handsomeness might be lost on me.

Now that I have a name and a way to explain my condition, I’m much less embarrassed about my regular social blunders. I tell people regularly that I have face blindness. I mention it in my email signature and on the first day of classes. Many people I interact with on campus are in the habit now of saying, “Elizabeth, hi. It’s Susan from Admissions,” to let me know who they are. I’ve gotten much more confident when someone says hello to me in public about saying, “Hi! Who is it?”

A couple years ago, someone asked me if I had read Heather Sellers’s memoir of life with face blindness, You Don’t Look Like Anyone I Know. Although I hadn’t, I immediately recognized Heather Sellers as the person my friend had met at that conference all those years ago. I immediately bought the book and read it in record time. Sellers’s experience resonated with my own in such uncanny ways—she, too, was regularly accused of having looked right at someone and ignored them. She didn’t recognize herself in photos.

If you think you might have it, you can take this test to find out. Although there’s no treatment or cure, knowing you have it can help you understand your own experience better and, if you want to register with the Prosopagnosia research center, you can help researchers get a better handle on how many people actually have it.

P.S. Face blindness has nothing to do with my low vision. It’s a brain issue, not a vision issue.

Accessibility + Dis/ability, anxiety, grieving, mental illness

How to Be Gentle with Yourself

Twice in the last week I’ve told someone I hope they can be gentle* with themselves. They are both dealing with tough situations beyond their control—one’s mother is slowly dying and they are experiencing the heartbreak of anticipatory grief; the other has significant health challenges and just had a second bout with COVID.

It’s easy for me to identify situations where others should be gentle with themselves. It’s a bit more challenging to figure out when I need to be gentle with myself, but it’s something I’ve been working on and getting better at.

I’ve been struggling with a round of depression and anxiety for about a month now, sleeping much more than usual, feeling constantly fatigued and drained. There are days where I get nothing done beyond walking and feeding the dogs and myself and working out (I learned long ago that working out is a basic daily need for me and I almost never skip it, although I do sometimes allow myself to work out for just a few minutes—see #1 below).

For the first week that I felt crappy, I told myself I was wasting my life. I told myself I couldn’t have dessert or a glass of wine with dinner unless I accomplished certain items on my to do list. I told a friend I was being a loser. I asked myself repeatedly, “What the fuck is wrong with you?!” I rolled my eyes at myself in the mirror with the derisive, dismissive, contemptuous air of a teenager.

None of this made my depression and anxiety easier to cope with. It did not motivate me to stop sleeping so much or to fly into action, completing tasks on my to do list. It just made a difficult situation worse.

I wish I could tell you that when I stopped being mean to myself, my depression and anxiety magically disappeared. Alas, that is not the case. But when I stopped being mean to myself, I was dealing only with depression and anxiety rather than depression and anxiety and the cruel torment of a bully. Taking away the bullying made the depression and anxiety relatively easier to bare.

Want to be gentler to yourself? Here’s what I do:

  1. Don’t let perfection be the enemy of good. Working out for 5 minutes is better than not working out at all. I’ve been chipping away at writing projects in 15-minute increments, and while I’d like to be putting in more time, I’m not able to right now.

2. When I catch myself saying something to myself that I would never say to another person, like, “What the fuck is wrong with you?!” I take a step back and apologize. I remind myself that I am a kind person and that I am kind to everyone. Even myself.

3. Refrain from bad-mouthing myself to others. My form of self-deprecating humor can get a little out of hand sometimes and I’m trying to reign it in. When I am about to tell a friend I’m a lazy ass, I remind myself I am depressed.

4. Continue allowing myself dessert, wine, and other treats rather than making them contingent of achievements. Everyone deserves pleasure in their life.

5. Remind myself that depression and anxiety are illnesses, and just as I would cut myself slack about sleeping a lot if I had the flu, allow myself to act like a sick person.

6. Accept what is possible under the current conditions. Although I’ve gotten by with 7.5-8 hours of sleep a night for many years, lately I seem to want more like 10 hours of sleep. It’s very inconvenient. I can’t possibly get done what I normally get done with two hours a day less to do things. This is where guideline #1 really comes in handy. And it turns out that a lot of things I normally do in a day don’t need to happen or don’t need to happen every day. What does need to happen every day is me taking care of myself.

7. Hold space for myself to be depressed or anxious. That means no fixing.

Being depressed and anxious still sucks, but at least now I know I have my own back. I don’t look in the mirror with self-loathing—instead, I look with compassion, as I would for anyone else on the planet.

*I no longer tell people to be strong. I think being gentle is both more difficult and more effective.

Accessibility + Dis/ability, caregiving

Disability is not a catastrophe

One of the ways I see ableism sneak into our lives is by the way we assume that disability is a tragedy and that the lives of disabled people are grim and hopeless. My late husband was disabled by his stroke and we had many challenges learning how to navigate life post-stroke. At the same time, our lives post-stroke were wonderful. 

 I recently told a new acquaintance about my late husband having a stroke and her reaction was so refreshing: she said, “That must have been intense” rather than “that must have been awful,” which is how most people react. Her response reminded me of Sallie Tisdale’s suggestion in Advice for Future Corpses (and Those Who Love Them) to think of something as difficult rather than bad.  

When we label something bad, it is easier to attach shame to it and avoid talking about it. That is not the case when we label it difficult. Humans may not always like things that are difficult but we respect them. My husband and I had many difficult days after his stroke. Some of those difficult days were the best days of my life so far. 

I’ve noticed how differently people react to two of my recent unusual experiences. When I tell people I went to Antarctica, they usually exclaim, “Wow! That’s amazing!” or something like that. They want to know about the experience, they ask to see pictures, and they listen intently to my stories. But when I tell them I was my husband’s caregiver for a year, they usually look horrified and say something like, “Oh, no! That must have been awful!” Very few people ask what it was like or for any detail. If I persist and talk about it, they often look uncomfortable. 

Yet, both experiences were mind-expanding, challenging, tranquil, anxious, and astonishing. The trip to Antarctica was by choice and the caregiving was by necessity, but both experiences were ones I cherish. 

I think people simply assume that the adventure of being my husband’s caregiver was a catastrophe while going to Antarctica was a wonderful adventure. 

Sudden, unexpected disability is certainly challenging. My husband and I had to adjust nearly everything about our lives and we had to do it with no notice. The adjustments were often awkward, sometimes expensive or time-consuming, and often felt very unfamiliar and so seemed off. But as we got used to each adjustment, it came to feel normal to us. 

People who are not used to helping their partner use the toilet assume it is a horrifying experience, but once we learned the logistics of it, it was just part of our usual routine. We had some of our best conversations while I was helping him use the toilet, as well as some of our biggest laughs. 

Considering that most of us who live long enough will become disabled at some point in our lives, it makes more sense to approach disability as a normal part of any life. We don’t have to look forward to it or even like it—there are many parts of life we dislike (paying taxes, for example, or flossing or job interviews), but we accept them as normal and that impacts our attitude toward them. We may feel trepidation and even some dread around job interviews, but we don’t avoid people who are on the job market. We don’t plug our ears and shout “la la la!” when they talk, but when I start talking about being my husband’s caregiver, many people do the equivalent of plugging their ears. 

And then there are those who perk up, relieved, I think, that I am talking about it. I want more of us to perk up or at least not turn away. 

Hearing and vision will fade, mobility will slow, and anxiety and mental illness will impact many of us. If we refuse to acknowledge that, our fear will be magnified and the avoidance and secrecy around disability will make it that much harder to talk about it. 

Accessibility + Dis/ability

What You Probably Don’t Know about Non-Apparent Disabilities

I once harassed a woman who had parked in a disabled parking spot at a store. She looked non-disabled to me and walked hurriedly into the store. I waited for her to return to her car and then made an obnoxious remark about her having a fake parking permit.

I wish I could say I was drunk when I did this, or that I was put up to it by someone else, but no, I did it of my own volition and felt quite righteous about it for a long time afterwards. In my mind, I was defending disabled people.

In reality, I was harassing a disabled woman and probably adding a huge load of anxiety to what might have already been a tough trip to the store.

I now realize that the woman I harassed likely had a non-apparent disability. I’ve heard the term “invisible disability,” but a colleague taught me that it actually makes more sense to call them “non-apparent disabilities” because they aren’t invisible to everyone. My own vision impairment, for example, is invisible to a lot of people but not to me or my loved ones.

People with non-apparent disabilities are often targets of the kind of harassment I subjected the woman in the parking lot to.

I mistakenly thought that disability was stable and apparent. It took my becoming disabled myself and then being the caregiver of my disabled husband to really understand how fluid and non-apparent disability can be.

I recently spent the day with a companion who has a non-apparent chronic illness. We went to a museum together, and although they walked into the museum, they decided to use a complimentary wheelchair to navigate the exhibit to conserve their energy. Not having to summon energy to walk allowed them to fully concentrate on the exhibit without tiring themselves out. Anyone watching my friend walk into and out of the museum might have thought they were using the wheelchair gratuitously.  

Disabled people sometimes talk about not having enough spoons to do something. Imagining spoons as a metaphor for units of energy comes from Christine Miserandino, who has lupus. Her 2003 essay, “The Spoon Theory,” describes her explaining to a non-disabled friend that when someone has a chronic illness, they start each day with a limited number of spoons and everything they do means subtracting one or more spoons from their initial bunch. They need to make choices throughout the day about how to use their spoons.  

My friend using the wheelchair in the museum allowed them to put their limited number of spoons toward processing the exhibit and then socializing with me. If they had chosen to walk through the exhibit, there would have been fewer—or maybe no—spoons left for other tasks of life: getting home safely, making and eating dinner, responding to text messages, etc.

My low vision means that navigating new spaces takes a lot of spoons from me. Most people can see without using any spoons, but every time I’m in a new space, I need to use a few spoons to figure out where the dangers are lurking—the poorly marked staircase, the column painted the same color as the wall beyond it, the invisible-to-me screen door.

Today is a pretty typical day and already I’ve used quite a few of my spoons. When I woke up and noticed it was overcast, I knew I was already down a spoon. If it started raining, I’d be down another one, so I knew I had to conserve spoons just in case. Luckily, the days are long right now, but from November through March, I’m down a spoon because of the short days.

I’ve already used

  • two spoons because my vision is inexplicably blurry lately.
  • one spoon trying to figure out where the crosswalk was near a construction site on my way to the bus stop. I made the choice to walk an extra two blocks to skirt the entire construction site but be able to see where I was going.
  • one spoon trying to figure out why a website wasn’t processing my request to make a purchase. I ended up abandoning the purchase.
  • two spoons reading my kindle with my distance glasses on the bus because the bus was full and I was afraid I’d be jostled while changing into my reading glasses and if I drop them, I’m useless. This poor choice meant I couldn’t read for the first hour I was at work because my eyes were too strained.
  • one spoon making the decision to not finish answering an email that requires me to dig up a report. My vision was starting to double and I need to conserve it so I’ll be able to proofread a draft an employee gave me later.

It’s 4:30 pm and I’m down at least eight spoons. That’s probably enough to get me through the rest of the day, but the trickiest thing is that I never quite know how many spoons I started out with. I like to think I start with ten, but some days I am suddenly out—my vision goes double or everything is blurry. I don’t know why I got fewer spoons those days, but once they’re gone, they’re gone.

Whenever I hear colleagues talk about students “taking advantage” of accommodations they don’t “need” or “gaming the system,” I know the righteous indignation they feel—that’s what I felt when I harassed the woman in the parking lot.

Now I know better. And now you do, too.