Tag Archives: disability

grieving

Election Grief: When an Election Breaks Your Heart

When folks ask how I’m doing since the election, I find myself saying, “Hanging in there, all things considered.” And by “all things considered,” I mean watching over half the country vote for someone who thinks it’s okay to mock disabled people, treats sexual assault like it’s no big deal, plans to legislate from an antiquated concept of sexuality, and dehumanizes people who have made epic sacrifices to be here. Just like after my husband died, I dread being asked “how are you?”

This kind of hurt feels surprisingly like other kinds of grief, and that makes sense. Just like when someone you love dies, the election of a candidate who mocks your values and rejects your humanity can mean the loss of a dream. The future will not look the way I hoped. Things I thought I could count on now feel uncertain.

Folks often think of grief and disability as purely personal experiences, but when we live in a world that expects us to bounce back from loss in a few days of bereavement leave, or navigate buildings with no ramps, or explain our access needs over and over, those personal experiences bump up against political realities. Every time someone has to choose between keeping their disability benefits and accepting a job offer, that’s political. Every time a grieving person has to fight with insurance companies while planning a funeral, that’s political.

When we have to justify our need for accommodations or defend our right to grieve differently, we’re dealing with systems and structures that were built without us in mind. And the ways we respond to those factors is political. When we share our stories, when we advocate for change, when we refuse to squeeze our experiences into society’s too-small boxes, we’re doing political work. We’re saying, “Hey, there’s nothing wrong with us. There’s something wrong with a world that doesn’t make room for grief and disability as normal parts of human life.”

I’m treating my election grief similarly to how I treated my grief after my husband died:

  1. Acknowledging the sadness. The heartbreak is real. Belittling myself for feeling it won’t make it go away. I am turning toward my grief rather than away from it, practicing everything I learned from Doug Kraft about gentle strength after my husband’s stroke. I am feeling my feelings, even when they hurt like a gut punch. This is doing the work of grief. It’s not time that heals, it’s doing the work of grief.
  2. Connecting with others. I joined support groups and met other widowed people. In the aftermath of an election, this might look a little different. Last week, I attended an event for a visiting artist on campus that had nothing to do with the election, but it provided an opportunity to connect with colleagues engaged with art. I also attended an online meeting of the League of Women Voters, which let me connect with other people specifically around the election.
  3. Taking good care of myself. Sleeping, staying hydrated, and exercising are important, but setting and holding boundaries, especially as the holidays approach, is important. It’s been useful for me to reflect on how I want to engage with people who voted differently from me. I love them, but that doesn’t mean I have to spend time with them or tolerate offensive conversation or behavior. I can decline invitations, leave the room, or take myself home. I cannot change other people’s minds, but I can control how I respond to them.  

    I’m also holding boundaries around my news consumption: I do not check the news for the first hour that I’m awake. This helps me start the day thinking about my goals and priorities so that when I do check the news, I can see things within the context of what’s important to me, rather than the other way around.

Like any grieving process, grieving the results of this election won’t be linear and it won’t look the same for each of us. Give yourself and others grace. Keep putting one foot in front of the other. Sometimes the most radical thing we can do is to keep showing up.  

death

What Dying People Teach Me about Slowing Down

Time moves slowly for Margaret as she waits to die. She’s been expecting death to come for months, having outlived her medical team’s predictions by 8 months now. Her adult children try to get her to move faster as she goes about her day. If she hasn’t touched her snack in a few minutes, one of them will say, “Mom, take a bite of fruit.” A few minutes later, one will ask her if she’s finished with her snack. Her answer is almost always the same:

“I don’t think so,” said slowly and deliberately. She will not let other people’s rushing determine her pace, which is languid and relaxed.

When I help her sit in her push button recliner, she often calls out halfway through its recline, “Oh, wait, stop.” The reclining action is too fast. She wants it to slow down, but the chair has just one reclining speed, so she takes a break midway through the recline and then lets me know when she’s ready to continue reclining.

I’ve seen this resistance to hurrying in other people near end-of-life. I adore the paradox: those with the least time often understand best how to use it. Margaret, Shawn, and others are deeply present in the moment. They speak with measured words and seem to feel no urgency. Every simple act becomes a meditation – there is no rush when every moment holds its own completeness. A sip of water is something to savor. When I hold Margaret’s hand, she smiles contentedly and squeezes my hand, taking time to really connect before letting go.

This radical slowing down stands in sharp contrast to the pressure in the larger culture to be “productive,” to multitask, to do things quickly, efficiently, and do more and more of them. The urgency I feel to respond to texts or check the news headlines evaporates when I am with someone who measures time by something other than tasks completed.

After my husband’s stroke, it could take an hour to get him dressed. Rushing only slowed things down—an arm would end up in the wrong sleeve, a nearby lamp would get knocked over, or worst, we would argue—so I learned to let getting dressed unfold at its own pace. Instead of thinking, “I need to get out his clothes, make sure he’s ok with them, get his pajamas off, get his shirt on, get his pants on . . .” I focused on the first thing that needed to be done and tried not to think about the second thing until the first thing was completed.  

Getting his clothes out might take one minute or it might take 20, depending on his mood, the weather, how caught up I was on laundry (it seemed he always wanted to wear the clothes that were in the dryer at the moment rather than the ones that I had already folded and put away). On the days when I was distracted while we picked out his clothes by all the other things that needed to be done, I didn’t listen as well when he mentioned that he wanted to be bundled up in flannel, and then I’d be impatient when he resisted putting on the non-flannel shirt.

In the moments when I rushed Tom, I felt justified. It was usually because we had an appointment with a doctor or physical therapist and being late would mean forfeiting the slot. But rushing him meant forfeiting the warmth of being on the same team. I understand why I rushed him and at the same time, I wish I hadn’t.

We can only ever exist and act in the present moment. Our minds can speed ahead into the future, but we cannot. Being present means keeping your mind anchored in the here and now. When I let picking out Tom’s outfit take as long as it needed to take before moving onto the next step of getting him dressed, I was calm and present. When I let reclining Margaret’s chair take as long as it needs to take, I am calm and present.

I need to learn over and over that time doesn’t need to be managed or conquered. It needs to be inhabited, fully and without hurry, one moment at a time.

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.

Aging, caregiving

Use Silence for More Authentic + Vulnerable Conversations

I visited a hospice patient last week who is slowly detaching from this life. I know from my end-of-life doula training that this is normal. As they get closer to death, people often turn inward, eating less, talking less, seeming less engaged with the world outside themselves. I see this happening with Margaret.

When I arrived at her apartment, she was sitting at the table, staring down a plate of scrambled eggs. Her head hung. There was a fork in one hand, but that hand rested on the table and the fork dangled a bit precariously.

“Mom doesn’t want to eat,” Margaret’s daughter told me. I have assured the daughter on previous visits that it’s normal for people to lose their appetites and that if Margaret doesn’t want to eat, it’s ok. But the daughter would really like her mother to eat.

I asked Margaret if she was hungry.

“No,” she said quietly, not making eye contact. “I’m having . . . a bad day,” she said slowly, still not making eye contact.

“Do you want to talk about it?” I asked.

“No,” she said. Despite having said she wasn’t hungry, she started tentatively eating the eggs. While she ate, we sat in silence. Each bite seemed to take her full concentration and I didn’t want to break it. When she finished eating, I helped her to her recliner, where she dozed. My entire visit passed in near silence. It was peaceful and when I left, Margaret’s daughter commented that her mother was less agitated than she had been earlier.

I’ve always loved silence, but for most of my life, I tried to avoid it unless I was alone. Unless the person next to me was a stranger or we were watching a movie, I felt compelled to fill the silence with conversation. Unless I was alone, silence felt awkward to me. I think many of us are socialized this way.

At work, I’ve championed silence. In the writing center I direct, I teach tutors to allow silence in their sessions to give their clients time and space to reflect. I set a timer for ten seconds and we sit silently for the full ten seconds. It’s hard. We are not used to ten full seconds of silence.  

When I teach, I allow at least ten full seconds of silence to pass after I ask a question. My students sometimes comment on how uncomfortable the silences in my classes are. But more often, students thank me for providing the silences, saying those moments are productive for them.

Since my husband’s stroke, I’ve been allowing more silence into my conversations. My husband needed the processing time, and I’m finding that it’s not just folks who’ve had strokes who benefit from that time.

Being with someone in silence is a great way to hold space. Filling the silence with insignificant chatter does not invite authenticity or vulnerability.

If you’re not used to being silent with someone else, it may take practice before it feels configurable to you. That’s ok. I’ve been practicing for years and still succumb to the pressure to fill the silence sometimes.

If you want to get more comfortable with silence, here are some strategies to try:

  1. Practice counting seconds in your head after someone speaks and before you speak. Notice how many seconds (if any) typically pass in silence between you and the other person. Aim to extend it by one second. It may take many days or weeks of practicing this before you’re ready to extend it by another second, but that will eventually happen. Then add another second. You will notice your conversations stretching out, like a cat settling into a sunny spot. You will feel calmer. You will be listening better, thinking less about what you’ll say next.
  2. When the silence begins, take a deep breath. Use the breath to buy yourself a few seconds, but also to ground yourself in the present moment. I do this when I’m teaching. After I ask a question of the class, I take a deep breath and let it out slowly. Then I start counting in my head to ten. I don’t allow myself to speak until I’ve gotten to ten.
  3. Remember that silence is communication. It communicates patience, leisureliness, respect, attentiveness. It can de-escalate tension. In fact, silence has been key in helping me cope with tension and conflict without getting defensive. Recently, when I’ve been in situations that could escalate into an argument, I’ve taken a deep breath and made myself count to ten before responding. Interestingly, my responses in these situations tend to take the form of questions rather than defensive statements. I ask for more information instead of telling the other person they are wrong.

Others may not like the silence and that’s ok. They may not be used to it. They may be like the students in my classes who complain that the silence is awkward. Perhaps it is. But for me, allowing space for authenticity and vulnerability is more important than avoiding awkwardness.

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!”

anxiety, grieving

Identifying a New Secondary Loss, Nearly 3 Years Out

The death of a loved one has a ripple effect. There’s the loss of that person and then there are the secondary losses—the shifts in routines that make a day feel off, the friendships that fade because the person who held them together is gone or people are too uncomfortable to maintain them, the end of hobbies that depended on the person who died.

I count my anxiety and panic disorder (APD) as a secondary loss. Although I wasn’t diagnosed with APD until after my husband died, now that I understand what it is, I realize I’ve had panic attacks since I was a teenager.

My late husband had such a calming effect on me that I only had a handful of panic attacks after we met. With them going unrecognized by me as a symptom of APD and then them fading away during my marriage, by the time I was diagnosed after he died, it seemed like a new condition.

Now through the lens of hindsight, I see the reemergence of my panic attacks as both a reaction to his death and a response to the loss of his calming effect on me.

Throughout our relationship, when I felt panic rising in my chest, I knew that a hug from him or hearing his deep unwavering voice would steady me. I came to count on him whenever I was navigating a personal or work situation that felt overwhelming. He seemed to always be in control, which made me feel completely safe.

One time, for example, I was driving in a snowstorm on a busy highway before my vision impairments were diagnosed and it was the phase when my doctors were just telling me I wasn’t “trying hard enough” to see. The light gray of the sky, the white of the snow, the surrounding dirty vehicles, the asphalt all blurred together into a mottled smear. I wanted to pull off the highway, but I couldn’t see where the lanes were. I started hyperventilating in panic and realized I was on the verge of passing out while I was driving.

I called Tom and he talked me through the rest of the drive, settling my breathing so I didn’t pass out. As long as I could hear his steady voice, I knew I would be ok.

Even with the stress of his stroke during the COVID pandemic, holding his hand steadied me. Even when he was asleep, I found comfort in simply being in bed up against his body.

And then he died—and my entire APD coping arsenal was gone. The thought that he’s gone forever adds to my anxiety and panic. My learning to manage it on my own has been messy.

I’ve had a lot of anxiety lately as the three-year anniversary of his death in June looms on my calendar. One day last week I left to catch the bus to my dance lesson in a hurry and forgot my water bottle. One of my go-to strategies when I’m feeling anxious is to very deliberately drink some water, taking a sip, feeling it in my mouth, swallowing it, and being aware of it moving down my throat. Once I realized the bottle wasn’t in my bag, I could feel the anxiety tightening in my chest—a tell tale sign that a panic attack is rising. That’s when I realized I didn’t have my drugs with me either.

I held it together on the bus, telling myself the fresh air when I got off the bus would help. Once I got off the bus, I knelt on the sidewalk, gulping air. My hands were shaking and it took effort to think. I knew I needed to get some water. There is a water dispenser at the dance studio, but I knew the studio would be buzzing with people and I needed to avoid that. Physical activity helps, so I just started walking and came to a coffee shop a few blocks from the studio, where I bought a bottle of water.

I sat outside the studio, ritualistically taking sips of water between measured breaths. By the time my lesson started, I was on edge but not on the verge of a panic attack.

The dance lesson helped, too. I’m working on tango right now and hearing the familiar music activated my muscle memory and my body started shifting its resources from fight or flight mode to the work of holding my upper body in the tango frame, which is also surprisingly mental. I’m early enough in my work on tango that it takes a tremendous amount of focus for me to maintain the form (shoulders down, elbows up, head up and left, arms strong yet flexible, back arched yet tall).

The secondary losses hurt and nearly three years out, I’m still identifying them.  

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.