This is my last blog post for PsychCentral, because the site transferred ownership this month and if I reappear, it will be under a different banner. Coincidentally, Sunday was the 10-year anniversary of my being hit.

I’m not a big anniversary person; nothing actually happens on anniversaries. Not like the solar Sabbats I celebrate, when a solstice or equinox occurs to mark the passage of time. It does give me pause to reflect, though, especially with my blog ending. That is a thing that’s happening.

Sunday felt like a day when you laid out a great outfit but don’t want to put it on, because you don’t feel up to being the person that outfit makes you look like. I rode my bike to the grocery store and felt a little sick to my stomach because I made poor food choices that morning. I felt like I should have taken my long mountain training ride up Galbraith Mountain and back down around Lake Samish, and home through Fairhaven. I should have done something special with the day—but isn’t every day amazing just because I’m still breathing?

Something felt forced about it all. My family made much of it, sending celebratory texts in the morning. I felt a dark cast over my mood that hasn’t lifted 4 days later. I remembered the pain and terror of lying helpless, asphyxiating in the ditch, and that was mine alone. I didn’t want anyone else taking over that memory and deciding what it means. I have a pretty tight social group with my neighbors in our country ‘hood, and I didn’t tell any of them what day it was.

The thing is, I’m reminded of it dozens of times every day. Every time my numb wrist accidentally touches the edge of my keyboard tray and sends an electric shock to my elbow with no other sensation, every time I have to run back to the house to grab my pocket lotion bottle because I ran into someone outside, got my social on, and my wrist dried out and tickled unbearably. Every time I stand and talk to someone outside until the Clamp seizes my back and it’s too late to prevent a back spasm. Every time I reach the end of my sitting tolerance at my desk and get up to do a household chore (twice since I started typing this).

My friend Rosey was right. In our first conversation, when I reached my rehab goal of riding to Free Spirit Spheres to meet her and her husband, Tom, and stay in their lovely tree houses, she said one day my story would turn the page and I’d be about something else. I then discovered and joined the tiny house movement. The rustic life helps keep me healthy. Gradually I’m transitioning from science consulting to writing and cottage industry.

Reinventing my life was hard and I went through dark times. The worst was being cut off by my hospital care team. For 2 years after impact, I was their golden girl. As long as the insurance money kept coming, they couldn’t do enough for me. After the money ran out and my high-deductible ACA health plan drove me to bankruptcy, it was like going home and finding the locks changed and my stuff on the lawn. The orthopedic clinic that rebuilt both my arms won’t make me an appointment unless I agree to pay cash on arrival. Yet they grouse at me when I come in for not getting follow-up care at the recommended intervals.

Something my friend Mela said around the 5-year mark has been a lifeline during the dark times. She said, “I can’t imagine reinventing my life in less than 9 years’ time.” That number was so specific, it validated my still floundering about 5 years later. It’s been 10 years now, and I realize there is no “getting there.” Life is a work in progress. My life is completely different from how it would have been if I hadn’t gone out on my bike for Thai food after a hard day at work on August 23, 2010. For a long time, small decisions made me panic. Go to the store before or after lunch, what if it Really Matters?

Do me one favor today—if you drive, think about your car insurance. In this country, people consider insurance a necessary evil and they buy as little as they can get away with. I made it clear to my insurance agent that I wanted good coverage, and he never even showed me the top-end policy that was only $25 a month more than the policy he sold me. If I’d had that one (and I definitely would have bought it if I’d known about it), I would be living very differently today.

If you cause an accident and do more damage than your policy covers, your liability may not end there. Your victim can initiate a civil lawsuit, but if you don’t have anything, there’s nothing they can do. I couldn’t find an attorney with the stomach for garnishing Mr. Henderson’s wages. Most states have a fund to compensate people in my position; Washington does not. Think about what was done to me, and if you could live with that—if you messed someone up permanently and were allowed to walk away. From what I can tell, the man who hit me lives without any online footprint, and I’m guessing that’s to keep from being cyberstalked (which, if I had the opportunity, I’d probably do; the fact that I know means I’ve looked). I don’t pity him for how his life has been affected, though—he’s not struggling to make a subsistence income and taking pain medication to get through the day.

It’s not just about what you might do to someone else—you could be unlucky too. I had a “good” policy and look how I fared. Insurance is there for a reason. If you can afford to upgrade yours, it may turn out to be the best investment you ever made.

To my faithful audience, and especially Lori, aka Velveteen Rabbit, my longest-term reader and thoughtful commenter, I thank you for reading my rants all this time. I hope you’ve found things of value that help you cope with your own issues. I hope to blog again soon on one of Healthline’s sites (Healthline, Greatist, or Medical News Today), or on another home platform. I hope you’ll all find me there. Meanwhile, blessings to you all!

While mindlessly scrolling through Facebook the other day, I saw a montage of memes showing people with disabilities behaving in hilarious and irreverent ways. They were basically thumbing their noses at the stereotypes and provoking a bit of pearl-clutching. I marked the post with “love” and started to comment on how my friends at the rehab center loved to prank the therapists. I was drawn up short by a comment in the line before mine, “We are not your inspiration porn.”

I knew instinctively what the commenter meant by “inspiration porn,” but wanted to learn more about it. I Googled it and quickly found the TED talk by Australian comedian Stella Young (who died in 2014 at age 32), which popularized the concept.

Inspiration porn is when images of disabled people are used to provoke the feeling of “at least I have it better than that poor schmuck.” It’s often used to shame people into not feeling sorry for themselves—by making them feel sorry for someone else. Some clear examples of inspiration porn were shown; for example, a photo of a man with an artificial leg playing soccer and the message below, “What’s Your Excuse?” The distinguishing feature between real inspirational messages and inspiration porn is objectification of the disabled person, and praise for achieving anything in spite of the disability. As Stella Young said, “We’ve been sold this lie that disability makes you exceptional, and honestly, it doesn’t… I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our names in the morning.”

Not all inspirational art is inspiration porn, but inspiration porn is instantly recognizable to people with disabilities. I had a moment of insecurity about my own book, On Silver Wings:  A Life Reconstructed—is it inspiration porn? I did write it to inspire others in the rehab center where I did my recovery work. But did I objectify myself or sell out my own story in the process? I think I was pretty sensitive to the way each chapter came off, and I tried to be honest about the degree of suffering involved. I wanted my readers to get the message, “it’s going to be hard and it’s going to hurt like hell, but you have to do the work if you want your life back.” Also, “Life is going to look different from now on, but it can still be great.” I shared a lot of little stories of human connection, but when I heard the violin music in my head, I backed off. I just hope I didn’t have the volume button set too low.

When I was growing up, my family was into what we called “handicapped-retarded books.” In the 1970s, those weren’t considered offensive words, though our characterization of the genre was definitely meant snarkily. We loved those stories, though, of people overcoming huge obstacles, like Olympic skier Jill Kinmont in The Other Side of the Mountain. Looking back on it, I admit there was an element of craving for inspiration porn in reading those stories. That said, I think I learned a lot from them that helped me in rehab all those years later. The human qualities that I grew up to admire, resiliency and resourcefulness, were highlighted in those books.

In 2011, I received an award from the animal shelter where I volunteer, for Most Inspirational. I had mixed feelings about it, but I knew the award came from the outreach director’s heart, and she genuinely admired the journey she’d watched me take. There was an element of congratulation for simply surviving misfortune that made me uncomfortable, but if you dealt the same injury to several different people, you would have very different outcomes in rehab. To be fair, my level of recovery was extraordinary and I deserve some recognition for that. I don’t need or especially want it, though.

It can be a fine line between inspirational art and inspiration porn. I think the dividing line rests on who produces it and why—is a person with a disability telling their own story, or is someone without a disability telling it for them? Is the person sharing, or being exploited? Does the art tell you anything about the person other than the fact that they have a disability? That may be the key—are we looking at a whole person or just a disability?

I think the set of memes I saw, that the one commenter thought was inspiration porn, was on the borderline and could have been taken either way. Each of the memes had a great story behind it, that I could guess after my experiences with visibly disabled people in the rehab center. Taken as a collection posted on social media, they were designed to make people laugh, but there was that aftertaste of “Wow, aren’t those people brave to try to be funny?” that rankled a bit. That element wouldn’t have been there if the stories hadn’t been grouped in that way.

I had a disturbing interaction with a teammate in my trivia league a few years ago. She introduced me to a man who was going to be playing with our team, and then she said, “Show John your scars.” I was completely taken aback, and John was mortified. He smiled and said, “How about I buy you dinner first,” and to his credit, he bought my burger and did not ask to see my arms after dinner. That was a moment when I felt completely objectified by a friend! Inspiration porn in real life.

It’s a sign of the times, I think, that we are looking at things more thoughtfully and examining our motives. There will be people who see inspiration porn in everything, even honestly told stories, and there will be people who defend the most blatant examples of it. It’s something to think about as the world wakes up to ableism alongside all the other isms we’re coming to understand.

With invisible disability, inspiration porn can still apply. “Look at Mary, she has lupus and she still goes to work!” Using Mary as an example to get your lazy cousin Jane off the couch is not okay.

What’s your experience with this phenomenon? Have you seen examples of it? Have you ever been objectified as a lesson for someone else?

Wow, it’s August already. Does that make anyone else’s stomach clench in panic? Wasn’t it just last week that I started riding my bike without long pants on? Where has the summer gone? When we can’t go anywhere, how does the time whiz by even faster? Shouldn’t it be dragging along like a long wait on a paper-covered table at the doctor’s office? Summer has barely started, how can it be half over?

This feels like a sci-fi show. Of course I have to bring up a cult-hit example that few people have seen—I think of the crew of Firefly, as they reminisce about Earth-That-Was. They live on the space ship Serenity, and that’s their new normal, traveling between terraformed planets, reluctant citizens of the Planetary Federation. Their universe, like ours, is making it up as they go along. Because they are human, they keep on going and doing the best they can to survive.

The thing is, this hasn’t just been 6 months for me. My confinement began in September 2017 and I was up for “parole” this summer. The high point of every summer for me, ever since I got hit, is my big annual bike trip. I also take many smaller trips, 3 to 5 days long. The summer of 2017 was amazing for me. I took the ferry to Nanaimo, then rode north to visit friends in Qualicum Beach and Comox. I took a side trip up to Campbell River, snapping a selfie on the 50^th Parallel. I had planned to ride the bus back to Renee’s from Oyster Creek, halfway back from Campbell River, but I misread the schedule and missed the bus I’d planned to take. I felt so strong, I rode all the way back to her house, for a record day of 53 miles. (My precrash record was 131, but most uninjured people I know can’t ride 53 miles.)

A week after I got home, I was back at my temporary job delivering take-out food for a local competitor of Uber Eats. I was walking up to a rental house near the University when I noticed a heaved slab of concrete sticking up about 4 inches from the walkway. “Don’t trip on that,” I told myself, and held my eyes on it to keep from missing it. The front door opened and my customer stepped out—a young man in an electric-blue paisley shirt, his hair dyed to match. I was distracted for a moment by this bright person—next thing I knew, my face hit the pavement. There was blood everywhere. I hadn’t been able to use my hands to break my fall because one held my phone (with the delivery app on it for my customer to sign on the screen) and the other held the bag with his burrito in it, now splattered across the lawn. Do you know how hard you have to fall to break polycarbonate eyeglass lenses?

Later, after my concussed head quit throbbing, I became aware of pain in my knee, which had swelled grotesquely. That began a winter of convalescence followed by a summer in physical therapy. I missed my summer touring season, but at least I got to visit my friends in the car. I had resisted taking a car onto Vancouver Island up until then, partly because of the $200 round-trip ferry cost, and partly because driving to Free Spirit Spheres in 3 hours would destroy the magic of the 3-day trip to get there. But that’s what I did, and I went back again in August to visit another friend. That was the visit that started my attempt to buy a tiny house in Canada, which led to crushing disappointment when I was denied residency (even though my home would be paid for on arrival—it made no sense at all). That disappointment led me to rashly say yes when another opportunity came along in December, and by March 1 I was settled into a more expensive tiny house here on my side of the border.

Last summer I managed to do one 5-day bike trip to visit my friends at Free Spirit Spheres. As I sped down Horne Lake Road from Highway 19, I shouted into the wind, “I’m back, baby!” I even did well on the hilly ride back to the Duke Point Ferry Terminal.

This summer I was supposed to get back in my “real” body—the one I struggled so hard to build after I was hit, before I fell and set myself back so far. By March I was already doing 25-mile rides, ramping up for my 43-mile hill training loops up Galbraith Mountain and around Lake Samish.

On March 6, I attended my last group activity, a community service award luncheon put on by my local Humane Society. My friend’s dog had just died—the dog I had introduced her to a few years ago—so I hugged her. This was no French air-hug with a perfunctory cheek kiss, this was a squeeze-the-daylights-out-of-your-bereaved-friend hug. Several days later, my friend was seriously ill with COVID 19. Somehow, despite prolonged indoor exposure and physical contact, I did not get it.

A week later, we were on lockdown. I continued riding my bike—what else was there to do, after all? But the long summer rides weren’t happening. June was cold and rainy, a typical western Washington “Juneuary.” I was busier at work than I’ve been in years, and I couldn’t afford to say no to the extra hours. I didn’t want to ride too far away because I didn’t want to stop to use the few public bathrooms that were even available. Riding multiple loops with stops at home made it too easy not get back on and do that last 10 miles.

I’m still in my winter size jeans—I’ve done just as much stress eating as everyone else. I had planned to take a week off work and do a series of long day rides to simulate a bike tour. That could still happen in September, but I’m just not feeling it now while work keeps rolling in.

At least the demands of country life have raised my physical fitness baseline. Condo life made me soft; if I wasn’t on my bike, I wasn’t moving. Here I have chores from morning until night. The garden harvest is coming in, and with it, the tasks of cooking, freezing, or donating the surplus. As well as continued weeding, watering, and other garden-tending chores. Inside my house, I’m constantly going up and down steps or the ladder to the storage loft. My left knee has toughened to this expectation and rarely complains about it. Every night by bedtime, I’m bone tired.

I was talking with my friend and disability advocate Heather Thompson a while ago, and we agreed that country life is healing for us. We may overdo it once in a while, but it raises our baseline condition and forces us to keep trying and stay engaged with our surroundings.

I lost a lot of ground during the 3 months I was completely without medical care at the beginning of the pandemic. I was in so much pain by the time I went back to massage, I wept on the table. It took 2 sessions to get the relief I needed. Then my chiropractor recovered from a severe case of COVID 19 and went back to work. My acupuncturist just reopened a few weeks ago, much to my relief—acupuncture helps control my hot flashes and the withdrawal symptoms from ramping down my pain medicine (which I ramped back up during the lockdown).

And now there’s lake swimming! My upper body needs that exercise so badly. I hurt myself the first 2 times I went, then my body began to limber back up. I sneak out early in the morning while it’s still chilly out, to get to the beach and back before the families descend on it. I swim out into the deep water and greet the rowing crews as they glide by.

This isn’t a normal summer, but it’s hard to adjust to not having normal expectations of it. Especially since I’ve already been out of the action for 2 years and I was supposed to get sprung this year. It’s been a good summer, full of joyful moments, and it’s by no means over, but I can’t shake the feeling that I’m missing it. I have to stay in the moment and enjoy the summer that is, rather than wishing for the one I’d planned.

What about you? What setbacks have you had because of the lockdowns, and what are you having trouble adjusting to? Are you still emotionally living on Earth-That-Was?

“Strumming my pain with his fingers, singing my life with his words, killing me softly with his song, killing me softly…”* This is the song that ran through my head as I read I Don’t Believe in Popular Kids:  Lessons From One Girl’s Fight for Inclusion, a zine by Heather and Liz Gold (pseudonyms for the girl and her mother, to protect the young author’s privacy).

For those of you unfamiliar with the term, a zine is a booklet or “any self-published unique work of minority interest, usually reproduced via photocopier.” Heather’s zine was published by Microcosm Press, an essentially nonprofit publisher in Portland. I say “essentially nonprofit,” because they are not a 501(c)(3) corporation; they don’t want to have to adhere to the requirements for that designation. They offer their publications on a sliding scale, and they like the zine format because it’s inexpensive to produce and makes materials more affordable to the people who could benefit most from them.

Back to Heather! She’s a young woman who was recently diagnosed with Autism Spectrum Disorder (a catch-all term for neurodivergence of many kinds). Heather was bullied from the time she was very small. Neurodivergent kids seem to be a magnet for this sort of thing. Heather is lucky to have a mom who advocates for her and empowers her to use her voice.

Chapters in the zine include “Honor Your Weird,” “Show Your Scars,” “Make Space, Take Up Space,” and “Recognize Victim Blaming.” Her emphasis is on being the kind of friend you want to have and creating the kind of community you want to live in. It doesn’t punch back at the popular kids so much as it simply dismisses their hierarchy. Heather and Liz tell stories of cruelty without self-pity, and talk about how to deal with bullies while keeping to the high road.

Heather’s story hits me in the heart. I received my diagnosis of “almost certainly Asperger’s” with the offer of a referral for formal testing when I was 38. A therapist said she saw all the hallmarks in me—my savant spelling skills, my facility with written language that turned awkward with speech, my literal take on everything I heard, and my avoidance of eye contact and social touching. I didn’t need testing to confirm what I’d always known without a word for it. I was different. I was a prey animal in an academic Jurassic Park.

Heather’s stories sounded excruciatingly familiar. Liz’s sentence, ‘One of the girls had conned Heather into changing her appearance, claiming she would be “cool” if she followed the advice,’ took me right back to sixth grade, when the neighbor girl, Linda, said I could only be cool if I unbuttoned the top button of my shirt. To me, it felt like leaving the cap off a pen (a thing I found unbearable and had to rectify any time I saw it, even if it wasn’t my pen). I wish I’d had a friend like Heather when I was 11.

Heather’s practical guide to dealing with bullies starts with learning how to think about yourself and your right to take up space. As her mother says, “Being yourself is an act of resistance.” After she changed schools, instead of trying to fit in with the popular kids, Heather found her tribe outside it and discovered her own way of belonging. It reminds me of Greta Thunberg’s assertion that being different can be your superpower.

Heather’s zine has been distributed to school principals and teachers in her district, and in my opinion it should be part of every school curriculum. I know it would have changed my life years ago.

Out of curiosity, I checked out Microcosm Press’s other offerings and found a series of zines called Your Neurodivergent Friend, designed to help people understand the way the world looks to people who experience it differently. I ordered Volume 2, Being Taken Advantage Of. I had never thought of that as something that happens more to neurodivergent people, but I saw myself all over that zine as well. It’s full of helpful information—not so much direct advice, but in reading it, you learn to see the red flags that say “this isn’t right,” and apply them to your own situations. You see the exact moment that an interaction turned predatory and think about how to head that off in your own life.

Microcosm Press offers subscriptions to new materials on a sliding scale, based on your ability to pay. Unlike social service agencies, they don’t do any means testing to make you prove your need. This small, independent press is a wealth of information on a variety of subjects, all centered on building community, off the beaten track.

* lyrics from Killing Me Softly, written by Charles Fox, sung by many, most notably Roberta Flack

What happened to “Shelly” shouldn’t happen to anyone, but it’s happening all over right now. Shelly has been anonymized to the point where she might not even recognize herself, but her plight is real.

Shelly has an autoimmune condition and struggles to maintain her job as manager of a small boutique at the local mall. With her you’d-be-surprised-how-little-over-minimum-wage income from this job, she supports her adult daughter who is disabled and has the same autoimmune condition. Shelly has relied on the local food bank off and on for a few years now, even though she works full time. Nonetheless, Shelly is known as a generous woman in her community, providing all kinds of help to neighbors in need. It’s true what people say—those who have the least, give the most.

When the pandemic hit and the first lockdown order came, our local mall closed. It’s been so weird going by that huge building and seeing it deserted, with all those acres of empty asphalt. When we went to Phase 2 at the beginning of June, some of the larger stores reopened with safeguards in place. Shelly’s store remained closed.

Now Shelly’s store is reopening. Returning to work isn’t safe for her, even with normal precautions for that type of business, because any exposure to the virus could threaten her life, and her daughter’s if she brings it home with her. Shelly’s employer insisted she return to work; she refused. Because of this, her employer can consider her separation voluntary and she can’t get unemployment. Washington’s COVID-related unemployment benefits have been exhausted anyway and if you don’t go back to work, you don’t get paid. She may have a case against her employer or the state; kicking around on the internet has only confused me further as to what her rights are in this situation. The bottom line is, she’s out of a job because she and her employer disagreed on when it is safe to return to work. It’s hard for a woman over 40 to get another job, and it’s unlikely to happen before the pandemic has passed.

The dilemma is real for so many people in this audience. I have another friend who doesn’t know yet if her daughter’s school will reopen in the fall, but she can’t send her either way, because my friend has a serious immune system deficiency and can’t risk having her daughter bring the virus home.

We’re not all able to resume living in the world at the same pace. The world is in reactive mode and policies are being made in haste—and they’re always one-size-fits-all. Many in this audience will be left behind or forced to make hard choices.

Once again, I’m aware of how my hard-luck situation was turned into privilege when the pandemic hit. Living alone (if you consider a houseful of cats “alone”) in the woods, in an active rural community where we look out for one another, working from home as I have for the last 10 years, I’ve had it relatively easy through all this. I definitely suffered from a lack of medical care during Phase 1, but that’s improved a lot since I restored my regular care routine. It hurts my heart that I can’t go visit my friends in Canada and ride through the land I’ve come to love, but that’s nothing compared to losing a job or a home. I don’t have to weigh a child’s needs against my own, or decide whether to risk my life or my job by making a stand against an employer.

This is really your column today. Tell us all what hard choices you’re facing at this stage in the pandemic. Maybe someone else’s dilemma is similar to yours and you will have insight for each other; maybe you’ll just be seen.

Of course our phased reopening of the economy had to degenerate into a circus; there is nothing in the US right now that doesn’t split into factions somehow.

I live in Washington state, north of Seattle, almost at the Canadian border, which has been closed for months. My county made it to Phase 2 of the Safe Start Washington program. Phase 1 was total lockdown with essential businesses and services only. Phase 2 allowed some businesses to reopen with safeguards to prevent spreading the virus. Thanks to people who are overeager to let up on restrictions, we have failed miserably at reaching the milestones to allow us to move on to Phase 3. In the rural communities north of the college town of Bellingham, there are large numbers of protesters who refuse to wear masks and gather freely—you’ve seen the news stories. I’m baffled that these people exist within a “hot spot” area. I could see it in a rural county in a part of the US that hasn’t seen any cases, but how, in a region where everyone knows someone who has been seriously ill or died, do people maintain their position that COVID 19 is a hoax?

It’s frustrating and potentially deadly for those of us who aren’t likely to have an easy time with the virus. People say we should take responsibility for our own health and continue to quarantine, as if complete isolation were even possible. I’m much better sequestered than most, yet I had to take a test two days ago to rule out the virus as a contributor to symptoms I had during a migraine that were outside my normal pattern. I had been to a medical office where one of the doctors had just been isolated with an active infection. We were never in the building at the same time, but exposure was possible. This all happened among people who took full precautions when going out. What happens when you throw anti-maskers into the mix?

My friend, let’s call her “Kelly,” has a serious illness combined with an autoimmune condition. She lives with her boyfriend, “Keith.” Keith’s news comes mainly from his golfing buddies and conservative radio shock-jocks. Like many of the people he hangs out with, he’s decided that he doesn’t believe the statistics being reported by the CDC. Somehow Keith has escaped the stomach-clenching rounds of twice-daily texting with sick friends to make sure they haven’t become too ill to help themselves. He hasn’t had to deliver groceries to the doorsteps of sick friends, then cajole them by phone into eating, because they have no smell or taste to stimulate an appetite. Somehow, in this county, he and his golf buddies have not only escaped this, but any firsthand knowledge of it going on.

In the beginning, Keith was downright paranoid, handling his phone with gloves on and distancing far more than 6 feet. A video went around in March, with footage too dark to see, but audio of Chinese doctors allegedly shooting patients in Wuhan. Keith was convinced that this would be the scenario in the US as hospitals flooded with patients. I immediately checked the video on Snopes and showed him that it was a hoax, but he was not convinced.

Three months later, Keith is sick of protecting himself against this unseen specter and he goes to work, and to play golf with his friends, without a mask. All of this happens outdoors, so maybe it’s not so bad, but whatever exposure he has out in the world, he brings home to Kelly. Kelly doesn’t have a very good chance of surviving the virus if she gets it.

This is where the logic falls apart in the notion that people who are at risk can simply choose to remain at Phase 1 in their own lives. We do not all live in isolation. We can’t all protect ourselves from the world. We can’t always count on the people who love us to protect us. And let’s say you do live in isolation and you are able to keep from ever going out—all it takes is one home delivery to expose you.

Let’s consider Uber Eats Driver Jane. Jane lives in Compliant County, where everyone wears their masks and chooses not to get nonessential services, even if businesses have been allowed to open with safeguards. Jane makes 25 deliveries on a 4-hour shift. Jane visited 3 houses where the virus was present, but because everyone masked up and washed their hands, she didn’t spread it to anyone on her route.

Jane’s twin brother Joe drives for Uber Eats in Liberty County, where there are lots of protests, businesses operating in spite of closure orders, and few people wearing masks or bothering to wash their hands carefully. COVID parties are the latest fad, and Joe has delivered to a few. Joe sanitizes his hands between orders and wears a mask himself, but by the time Joe gets to his 25^th house, he’s been breathed on by 12 infected people, some who don’t know it yet, and despite his best efforts to keep from spreading pestilence, he’s a regular Typhoid Mary. Joe has a partner at home who is HIV positive. Let’s take a moment of silence for him, shall we?

When my friend Kelly calls for a food delivery, she’s much better off if Jane comes than Joe. You see, even with her best effort to isolate, Kelly isn’t in complete control of her exposure. It matters what the other people several degrees of separation away are doing. It isn’t as simple as having her hide away while everyone else does whatever they want. The behavior of everyone in the community affects her.

I know in this audience, I’m preaching to the choir. If you have a Keith in your life, maybe show them this. And I’ll do my best to try to keep the real Keith from infecting Kelly. (Lest you suggest that Kelly could do better, let me assure you Keith does have many redeeming qualities and he is my friend too, but he doesn’t read my blog.)

Are you in higher-than-average danger from the virus? Are you experiencing a difference in the level of caution with people around you?

It usually happens in May; it came late this year. It didn’t come at all in 2019 or 2018, because of my knee injury. I’m talking about that wonderful moment, after weeks of progressively longer bike rides, when you suddenly aren’t pushing it anymore; you want to keep going and you’re not thinking about the finish line. There’s joy of movement, endorphin production, and what I like to call “muscle confidence,” that solid feeling of strength as you move fast and easy down the road.

My moment came a week ago Saturday. I had ridden out to the berry farm north of town to get ripe local strawberries for an outdoor “distance dinner” with the neighbors. I masked up to go inside the farm store, bought 2 pints of berries and secured them in my bike bags, and pushed off to go home. I had planned a diversion into a nearby town to mail my Netflix DVD from the post office there. (Most of my bike routes are built on a premise that’s thinner than a Target blouse. Yes, I could mail the DVD from any public mailbox in my own town, but that’s not the point.) I crossed the Nooksack River, noting that it’s still plenty high for this time of year, and navigated the streets of Ferndale until I found the Hidden Post Office. The building is almost invisible, with its 1990s horizontal dark wood architecture backed up against trees, and I find it by locating the Ace Hardware store just uphill from it. I dropped my DVD in the mail slot and started back toward the river.

Wait, what’s that? A row of brightly painted old-timey store fronts where the Boys and Girls Club building used to be. The club burned to the ground a few years ago. I turned left toward home, then flipped back around—I wanted to check that new mini-mall out. It was about a quarter mile down one of the roads that crisscross the river-flat behind the dike. I saw that the new storefronts were actually a gorgeous façade for the new Boys and Girls Club building. I imagined the hours of loving volunteer labor that must have gone into that. And ooh, there’s Pioneer Park behind it—I rode on to have a look, as I hadn’t been there in a few years. I enjoyed the memory of bringing two exchange students there for a day outing and wondered how Dora and Zoe were doing back home. Then it hit me—I was cruising around on my bike, with no thought at all to how much energy I needed to make it home. I was a good 10 miles out, and here I was playing around without a care in the world. I’d hit that moment in training where it came naturally. After a 2-year recovery from a serious knee injury, I wanted to cry with joy.

The stereotype of people with disabilities is that we’re shut-ins who don’t get much activity. For many of us, physical activity is what keeps us functioning at a higher level, gives us the endorphins we need to cope with chronic pain, and maintains our sense of engagement with the world. I’m a bicycling advocate in my town so I get several bike org newsletters, and last week I received a video I absolutely love. It’s made by a Seattle disability org called Rooted in Rights, and you can watch it here if you like (It’s about 7 minutes long). It shows a mix of people with visible and invisible disabilities, participating in cycling. I especially love that they included a woman with mental illness and showed the joy and sense of safety and control she gets from riding.

I’ve tried to soft-pedal the bike talk on this blog (pun intended), because it’s not a universal interest of this audience, but we’ve been confined for months with this pandemic—I want to talk about how we’re getting outside and moving our bodies.

I’ve heard from lots of people who relied on swimming for their activity, who haven’t been able to go to their pools since March. I’m one of those people; in my rainy climate, I’m lucky if I get a ride a week in the winter and early spring. My pool and gym are both closed. Any day now it will be warm enough for open-water swimming, which I greatly prefer to pools anyway. I wish when they reopen the pool, they would soft-open it just for medical-necessity users at first. That would allow for a less crowded facility and a safer experience for those of us who need to be there.

Swimming is popular among people with disabilities because it offers a no-impact activity with freedom from gravity that makes sluggish limbs more mobile. I had a friend in rehab who has never walked a step in his life, but with the help of Water Wings, he bobbed around the pool with confidence.

In the Rooted in Rights video, a few people mention that they run into people who don’t believe they’re disabled because they’re riding around everywhere. I wrote about that a while back in this post, and how uncomfortable I feel asking for disability accommodation when I’m in full cycling gear. I’ve had trouble at work because my boss doesn’t understand how I can go on long bike trips, but can’t work 8 hours at a desk—never mind that they’re completely different things, and the bike doesn’t demand fine motion from a reattached hand. The bike trips demand a level of energy I couldn’t sustain for more than 12 days or so, and only after months of training.

My bike is adapted for my post-crash body with extra wide “mustache” handlebars that hold my shoulders farther apart to reduce shoulder and neck pain. I have a thick layer of “Bar Phat,” a Spenco product that mimics human fat, on my handlebars so my reattached hand can handle some weight. Because it still can’t handle the recommended 30 percent of body weight, I have an extra-long bar stem that keeps my hands up a bit higher, shifting more of my weight to the rear. These adaptations make it possible for me to ride a maximum of 50 miles in a day (at peak summer training). It’s nowhere close to my pre-crash record of 131 miles, or my pre-crash road trip average of 70 miles a day, but I feel like it’s a bigger achievement in this body.

I’m not able to enjoy activities like bowling (unless I use a lightweight child’s ball), running, or tennis, but those things might be right for people with different issues. Are you able to do something to keep active? What works for you?

Here we go again—another week of meaty topics derailed by reality. I think sharing this with you may do more good for us all than trying to finish my researched topics this week. Maybe you’ll relate to my day.

Like my body, my brain (which is, after all, part of my body) has good and bad days. The poor thing has had a hard decade. After being slammed into by a hunk of metal hurtling along at 45 mph, with only an inch and a half of Styrofoam and a hard plastic shell to cushion the blow, most of the bloodflow was cut off when my carotid artery collapsed from the impact. My body’s effort to shunt blood to my brain by every other possible pathway while losing blood pressure from a severed radial artery resulted in a stroke. After hours of surgery to deal with other injuries in the ER, I was placed in a chilled coma to give my brain a chance to recover from this massive insult.

My skull cracked over the impact site. My helmet stove in like an eggshell. By some miracle, the hematoma was small and didn’t cause enough pressure to warrant drilling burr holes. (Bless you, every engineer at the Limar helmet factory in Italy.) Oddly, most of the hair fell out over the fracture and has never grown back—I have a permanent thin spot there that I feel when I French-braid my hair.

I came out of the coma with almost no sensation on my left side, which was a mercy at the time because my left arm hung shattered and useless, waiting for me to stop bleeding from my bashed internal organs before they could vacuum out the bone chips and join the intact ends with a rod. I’m glad I never really felt the creepiness of a limp-noodle arm. My right hand was enough to deal with as the reattached nerves woke up one by one and screamed for morphine.

Two nights before I was released from inpatient rehab, I tripped on a corner of the sheet they used to cover the recliner in my room. I couldn’t break my fall with either arm, one of which was bound to my chest with a sling and one with a reattached hand at the end of it, that instinct protected that night. I broke the fall with my elbow and smacked my head hard on my roommate’s tray table, an inch from the fracture line. Somehow, the next day, I passed all my balance and agility testing and was still allowed to go home.

Since then, I’ve had two severe concussions. After the first of the two, my doctor told me that one more concussion would result in permanent, disabling brain damage. So I fell face-first on a broken sidewalk and cracked my orbital bone.

My recovery from these things has been nothing short of miraculous. Still, I have my days when my mouth stumbles in the effort to make words, and the words I’m trying to say get lost in a dark tunnel somewhere. I get severe migraines, sometimes bad enough to make me vomit. And then there are days like yesterday—The Squirrel-Brain Days.

I started out with the best of intentions. I had a great chat with a client, who lavished praise on my work and my attitude. I tried to keep my promises to her—really, I did.

It was the first of the month, and that means month-end closeout. As a self-employed person, I have to tally my time and send invoices to the firms I contract to. I keep a tracking spreadsheet of my own financial condition, and I update this as well. I didn’t finish closeout until almost lunchtime, and I decided to eat early and jam on work for 2 hours before my chiropractic appointment. I looked forward to riding my bike there, as the weather app on my phone said the rain would stop in time.

I usually prefer to work in silence, but it was a cold, rainy July 1 and I had to run the heat in my house. An insult on that level calls for a good playlist. I turned on my Bluetooth speaker, with my iPod Classic hooked in by a cable (the Classic is not wi-fi ready). As usual, the speaker cut out in the middle of my favorite song. I had asked a techie friend about this a few days ago, and was told it timed out automatically after no change in signal for 20 minutes. He said I should be able to turn off that feature somehow. There were no buttons on the speaker to play with; it’s a modern tech piece with no visible control panel.

I am a manual reader, but like most tech these days, the speaker didn’t have one when I bought it. I searched for a model number to Google, and found it in impossibly faint gray-on-black print on the inside of the cable compartment cover. The downloaded manual opened a new world to me—I discovered that the speaker is supposed to be controlled by an app on my phone. This was not stated anywhere on the box. I installed the app and learned how to stop the time-outs, then played with it some more and changed the annoying colored strobe lights to a gentle fade-in color change sequence. I learned how to switch on “party mode” and play DJ sounds and play electronic drums with my fingers on various parts of the speaker. I was 27 levels down the rabbit hole when my phone rang.

I felt genuine confusion at this intrusion from the outside world. It was a spam number and I ignored the call, but I had been yanked back to reality, and I was 5 minutes late leaving for my chiro appointment—if I drove, which I had to because it was still pouring even though my weather app insisted it was just cloudy.

The chiro adjustment helped by relieving some of the shooting pains that distracted me from my work, but after I got home, my squirrel-brain came back in earnest. I couldn’t concentrate on anything for more than a few minutes. I gave up and turned on the TV, only to replay the episode of The Pretender because I’d spent the whole time Googling random thoughts on my phone and missed the whole story.

Today is another day. I’m still a bit muzzy, but the fact that I finished this piece before lunch is promising.

Anyone else out there with a TBI, ADHD, or any other issue that affects your concentration? I bet my off days are mild in comparison to what some of you go through.

If you’re older than 40, you probably remember the passage of the Americans With Disabilities Act on June 26, 1990. George H.W. Bush signed it into law.

It seems like it’s been around a lot longer than that; maybe because the push for handicap parking started in the late 1960s and hit its stride in the late 1970s. I was 26 in 1990. There is a movie that came out in 2007, Music Within, about Richard Pimentel, the Vietnam veteran credited with starting the movement to pass the ADA. I saw the movie in 2009, and don’t remember the story very well, so I looked it up again. Pimentel lost his hearing in Vietnam, and when he tried to go out for pancakes with his veteran friend who used a wheelchair, they were discouraged by the steps up to the restaurant entrance. That’s what started it all.

We mostly think of the beginning of the ADA as a time when suddenly there were curb cutouts and beeping buttons at every city crosswalk. As those new ATMs flooded the country, they all had Braille keyboards, even the ones at the bank’s drive-through, which provided jokes for the comedians of the time.

American Sign Language interpreters appeared at public speaking events, and at all government functions. Increased exposure to ASL led a lot of people to take classes and learn the basics.

We know that public buildings have to be accessible, and your employer has to make “reasonable accommodations,” but what else does the ADA actually say?

The original ADA as passed in 1990 said it was illegal to discriminate against individuals with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government service. The way people were to be protected from discrimination has evolved over time. Titles II and III were added in 1991, and there have been more revisions since.

The “living document” nature of the law is revealed in the inconsistent numbering scheme between sections. Only an editor like me would notice that. The text is predictably heavy on wheelchair users and blind and deaf people. Invisible disabilities are acknowledged, though. Section 12102 defines what constitutes a disability; the mental gymnastics of applying it to rheumatoid arthritis, for example, are up to the readers and their attorneys.

The law is now incredibly specific in what is required for the “standard” disabilities; for example, you may think in general terms, like you know “the commuter train has to be wheelchair-accessible.” Under the law, one car per train must be outfitted for wheelchair access (12162.a.1). The section goes into great detail about what “wheelchair accessible” means for different types of trains. Where on-board restrooms are provided, the accessible car must have an accessible restroom, that sort of thing. Requirements for dining cars are spelled out. There are even sections on requirements for refurbished and vintage train cars! (Subchapter 2, Part B, Subpart II, Section 12162.d and 12184.c)

You can see how individual lawsuits have influenced the law over time, like there is a section exempting federal wilderness areas from providing accommodations (Sec. 12207). Wilderness areas being roadless by definition, it would be impossible to provide paved trails for wheelchairs. You know that had to come about from a disabled hiker wanting to use a wilderness area.

There are weird provisions in it; for example someone found it necessary to codify the fact that being a transvestite is not a disability (Sec. 12208). I wonder what year that was added; awareness of the variety of gender distinctions is so high these days, you hardly ever hear the word “transvestite” anymore, while it used to be a suburban catch-all for anything related to gender nonconformity.

Now here’s an excerpt that I would like to shove in the face of my local Department of Vocational Rehabilitation office, from Section 12102.4.D:  “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” I argued with them at length when they did skill testing on a good day for me, and I insisted the results would vary, and if you tested me every day for a month, I’d have 30 different scores. I did score poorly enough to be declared eligible for services by the State of Washington. The low quality of the services offered was covered in a previous post.

Here are some bleak statistics from the U.S. Census Bureau as of 2018:

• 12.6 percent of the U.S. population has a disability (40.6 million people)
• Of these people, 7.6 million are employed.
• The median income for people employed with a disability is $23,848.

I did slightly better than that for income last year, and I have to tell you, it’s not a high standard of living. It’s a hand-to-mouth existence where one big vet bill or car repair can plow me under. You would think, after 30 years of protection under the law, that things would be better for us. This tells me that compliance is halfhearted and grudging at best in most places. Remember, there are many professionals with disabilities who are pulling up the median (but probably not by as much as they should) and a huge number of us are probably hovering around the poverty line ($12,760 in 2020).

I think the best effect the ADA has had is in public awareness. It seems that in the midst of what Whoopi Goldberg termed our “cold civil war” currently happening in the US, a lot of people are awakening to the simple fact that identity politics are nothing more than groups of people trying to get a seat at the table. The term “ableist” is used often, and people are finally starting to figure out what it means. In Michelle Lent Hirsch’s book, Invisible, she defines disability as “the failure of the world to make space for us.” Ableism is just that; failure to consider people with disabilities in the design of public places and events.

In 2018 I did a study on the VegExpo vegan festival in Vancouver, BC, and how it failed to accommodate the many people I saw there with disabilities, and me specifically. I sent them the link to the post and they didn’t respond, but I hope they did better in 2019. I had neither the income nor the endurance to find out. The experience gave me the insight, though, to realize that my inability to fully enjoy the event wasn’t about my limitations, but the event’s one-size-fits-all design that left me behind. It’s not that I was even asking for that much—it would have taken so little to make it more inclusive. (Canada’s disability laws are covered under the Canadian Charter of Rights and Freedoms and the Canadian Human Rights Act.)

The ADA has established a minimum threshold for accommodation. Some businesses, like Home2 Suites by Hilton, recognize that doing the bare minimum isn’t enough, and their hotels are a flagship model for inclusiveness. I love that they looked at the rules and said, “That’s not enough; we can do better than that.”

Sometimes it takes a law to get people to do the right thing. I wonder what the ADA will look like in another 10 years. Have you benefitted from the ADA? Has it failed you? Tell us about your experience. Also, if you have a witty suggestion for our “ceiling,” as in the glass ceiling for women and the gray ceiling for seniors, please share it in the comments. I would love to have a snarky term for us to use on our employers and social service workers.

This is an unapologetic fluff piece. I’ve been working on two meaty pieces, I’m not going to conclude either one today, and I’m a day late already. I’m losing my grip on the reins here, and it’s time to talk about why that is.

Number one, I have a day job. You didn’t think I made my living blogging, did you? If only that were true. While everyone else is losing jobs, I’m busier than ever. A few weeks ago I was complaining about missing out on the national summer vacation. My first adequate paycheck in months hit the bank yesterday, and with all the job carnage around me, I’m not complaining anymore. That said, I have 2 Environmental Assessments due tomorrow and can’t put them off any longer. Plus, the Canadian border is closed for another month, so it’s not like I was going to be able to run off on a bike tour any time soon anyway.

Number two, I’m burned out. This has been an eventful few weeks, and I think we’re all a bit combat fatigued. I admit it’s total privilege that I can even think about taking a rest. There are people for whom this is a fight for their very lives, and it would be disrespectful to pretend they’re not far more tired than I am, with no rest in sight. At least while I’m down, I’m reading White Fragility and learning a ton from it, so when I rally my energy, I can do better. Meanwhile, maybe you’re ready for something light too.

Number three, I had a stupid thing happen last night that stole some of today’s spoons before I even got up. I recently started fixating on the word “ignominious,” and this is a very ignominious thing—something beneath my dignity. As a blogger on invisible disability, it’s my job to share these things to validate your ignominious moments—those stupid things that happen to make a bad situation worse.

At my house, I close the food court at 8 PM. No food after Last Snack. This keeps me from having late-night heartburn and/or acid reflux. If you go to bed with an empty stomach, you can’t be woken up by a pizza working its way back up at 3 AM. The American tradition is to take Nexium and keep eating right up to bedtime, but I’m on enough pills, thank you. This is an easily preventable problem.

My last food item at night is a piece of fruit, usually an orange. I was kicking myself for running out of local strawberries, which are available for about 3 weeks, and I typically chow down a pint a day while they’re in their impossibly short season. I sighed and reached for an orange that had been in the fridge a while.

You know the stringy white things between the peel and the orange segment, that you strip off with varying degrees of care, because they don’t really hurt anything but they’re kind of icky? Well, one of those got stuck in the back of my throat, on the part of your tongue you press to induce vomiting. I gagged uncontrollably while I tried to dislodge it. First with water, then by swiping my toothbrush across the back of my throat. Somehow, through all this, I did not vomit.

The stringy thing went down to the point where I could still feel it but it wasn’t making me gag. It was also too far down to reach with anything, so I resorted to eating things of various textures to try to scrape it down. First some heavy whole-grain chips for coarse, then taffy candy for sticky. “Hearty Morning Fiber” Cereal for coarse again. All washed down with lots of water.

I gave up. It was driving me crazy, but I couldn’t keep shoveling down food before bed either. By now it was 9:30. At 10:30 I took a CBD capsule to help me sleep. It stuck to the stringy thing. I coughed and coughed, and drank more water.

I woke up on the hour needing to use the bathroom. At my house, that means going down 7 steep steps and back up again, so you wake all the way up. Some time around 3, I noticed that my throat was finally clear.

Today I have a headache and sore throat, and my stomach feels off from eating too late last night.

Even when we follow our careful routines and do everything right, stupid stuff can happen to derail our plans. Please, help me feel better and tell me what stupid stuff has happened to you.