accessibility · disability · fitness · illness

Disability, Fitness, and COVID-19

by Jane S

Sometime in February, when it became clear that coronavirus wasn’t just going to be an outbreak limited to China and its neighbors, I got a lot more serious about going to the gym.

The logic was simple. I have cerebral palsy, a disability known to make pneumonia more dangerous by causing habitual shallow breathing, which reduces lung capacity. Less lung capacity means less reserve if you contract pneumonia. But this can be modified by exercise. As long as I was doing a lot of aerobic activity, my risk of severe illness should be about the same as that of a physiotypical 30-something.

Since avoiding the risk of infection entirely was impossible (even if I could have stayed home all the time, family members go out), it made sense to focus on harm reduction. Better a somewhat higher risk of an unpleasant illness than a lower risk of a dangerous one.

In March, my options for physical activity began to narrow. I stopped going to BJJ class because it didn’t seem like a good time to be getting into people’s faces. A week or two later, when students were sent home at my university, the rock wall was shut down. My main fun activities were gone — an unusually rainy March precluded outdoor cycling — but I could still exercise, maybe even train for a birthday challenge. Then, on March 15, my city ordered all gyms to close.

It’s an odd feeling when your main tool for staying healthy gets taken away in the name of public health. I felt a loss of control, combined with anger on behalf of others who would be harmed more than me. I could plunk down a hundred dollars on a mini-bike to use at home and set up Skype sessions with my trainer — not perfect but better than nothing. But that’s financially out of reach for many. Some people with disabilities need exercise equipment that costs thousands of dollars. Others can only swim. It wouldn’t have been too hard to set up designated fitness centers for such people, but no one thought of doing so. Even physical therapy offices closed.

The idea that an important aspect of pandemic preparedness is being overlooked is not just my intuition. Julie K. Silver, the Associate Chair of Physical Medicine at Harvard Medical School, writes in a BMJ opinion piece that it is crucial “to recognize that strategies that might help slow the spread of disease and perhaps reduce its overall incidence (i.e., social distancing and sheltering in place), could have the unintentional and harmful effect of decreased physical activity and contribute to cardiopulmonary deconditioning. In particular, the elderly, who are most vulnerable to pulmonary complications from coronavirus, may exhibit a decrease in their baseline cardiac and pulmonary fitness that could substantially impact their outcomes and increase morbidity and mortality.”

Some of the very people most at risk from COVID-19 — the elderly and those with heart disease and diabetes — are the ones most harmed by inactivity. And that doesn’t even begin to take into account questions of maintaining overall health and physical function. How many older people will become frail, possibly suffering fractures or losing the ability to do activities of daily living? How many will die from this?

There is still an opportunity to maintain vulnerable people’s health during this time. Some can take advantage of exercise videos or routines available on TV or online, or exercise outdoors while maintaining necessary distance. For others, cities and medical centers should try to provide individual or small-group telehealth sessions (hospitals may be overwhelmed, but the skills of physical therapists aren’t immediately relevant to treating COVID-19 patients) and set up in-person facilities for those for whom this is not enough. Getting through the pandemic with a minimum of harm to individuals and society will require a comprehensive approach that includes everyone.

Jane S. is an ecologist who teaches mathematical biology. She enjoys climbing, Brazilian jiu jitsu and any activity that involves thinking with your body. She also gets a kick out of using her powerchair to move heavy objects.

advice · death · disability · Fear · health · self care

8 Lessons for Living with Uncertainty From a Perennially Vulnerable Adult

I get it. You’re facing down the barrel of your mortality right now, and the mortalities of your parents, grandparents, children and other people you care for. It sucks. Random, horrible things can happen and change your life forever. Or end it. But this isn’t news. Life can change in an instant, and it can be completely out of your control, and that has always been true. The only difference is now you are being forced to face the reality you could comfortably deny as long as your life was banally humming along. Welcome to my world.

At the age of 24 I went from a healthy, active person to someone with a disabling, life-threatening immune condition. Random chance, totally bad luck, threw me a curve ball that kept me in the hospital for a month, left me missing a big chunk of one lung and unable to walk up a flight of stairs without assistance. I spent 8 months on high-dose Prednisone and three years after that on weekly chemotherapy drugs to keep my body from attacking itself and killing me. I hate stories about how some horrible cancer diagnosis “was the best thing that ever happened to her” or how some terrifying ordeal “helped him have gratitude for the important things in life.” I don’t think my immune conditions (I’ve developed more over the years) have made me a wiser, better person. But I have learned from the experience, and I’d like to offer you these potentially comforting observations I’ve noted along the way.

The hardest part is the not knowing. It took about half a year before I had a diagnosis. Even with a diagnosis, the prognosis was up in the air. At one point I was told that I had only a 50% chance of living past 5 years. Later on, I was told they really didn’t know, there was just too little data to base any predictions upon. I believe that knowing is always easier than not knowing. How do you live your life day to day when you can’t plan for the future? You will make very different decisions when you know that something is temporary than when it may be indefinite. Coming to a place of accepting that you don’t know, living in the moment while planning for the future is the best balance I can suggest. For me, I have had to learn over the years to consider my barriers and limitations as flexible unknowns–I have to push against the boundaries to test them–is this a real limitation or simply something I feared would limit me? It’s a constantly moving target, and I’ve learned to be flexible as situations have changed.

Your life is at increased risk. You can get used to it. In fact, if you are going to get on with your life, you have to get used to it. We can only hit the pause button for so long, and then we need to get back into the swing of things. You will need groceries, a paycheck, a new pack of underwear. I live my life every day with the awareness that my condition can come back. Every time I have a cough, I have to consider, “Does this feel more serious than just a cold? Am I being irresponsible if I wait it out before going to the doctor?” Every little aberration in how my body moves and feels carries a heightened awareness to it, and yet, I don’t go around constantly anxious about my future. I notice it, I pay attention, and then I move on. Most of the answers to my questions come with time and patience. If you can avoid insisting on instant reassurance, you will find that you fare better.

Most people facing their own mortality don’t have the benefit of a social circle that understands. Don’t take it for granted. When I got sick, I was alone. Only about 6000 people in the entire United States have been diagnosed with the condition I’m facing. Not to mention, my peers at the time of 20-somethings could not even kind of relate to my ordeal. Lucky for you, pretty much everyone around you is dealing with some version of the same fear right now. You can support each other because you understand your shared uncertainties. On the other hand, you are at higher risk than I was for “social contagion.” The downside of collective awareness is that your anxieties can compound upon each other, fear can beget more fear, and as social animals, we are built to mirror each other’s emotions. Compassion and empathy are important, but I encourage you to temper them with calm and mindful acts of support.

It isn’t helpful to let the current situation dominate your thoughts. Practice the discipline of reframing your thinking, and you will experience less stress. This would be an excellent time to limit your exposure to social media, too. You don’t need other people’s fear speaking voices in your head. For those of you who like that woo-woo shit, feel free to increase your focus on your “gratitude practice” right now. Me, I’m going to limit my exposure to the news and increase work on some neglected projects around the house. This seems like an excellent time to begin planning my basement remodel. This sort of intentional shift of focus gives me something productive to put my energies towards rather than stirring up fears of the unknown.

On a related note, don’t let fear be your guiding principal. Consider making important decisions when your mind is feeling more calm–like right after a good meal with some satisfying, slow-digesting carbohydrates in it. Your fear-based decision might be making people like me less safe, if it means you switch to antibacterial soap, for example, and increase the likelihood of superbugs. The panic that has led to emptying store shelves isn’t doing the community any good, either. Consider finding other ways to take care of yourself than giving in to the hedonic needs of your fear.

If someone near you gets sick, when it is safe to do so, literally embrace them and return them back into your life. I developed mysterious lung symptoms and a persistent, low grade fever just about the same time SARS was in all the news. When I was released from the hospital, we didn’t know why I had nearly died, but we did know it wasn’t an infectious process. Despite this, I was treated like a pariah. No one would hug me, hold my hand, pat my shoulder. People would literally take a step back when I told them what had happened to me. It was like they were afraid that my near-death would rub off on them. It was exceptionally isolating in an experience that already left me alone in so many ways. So I ask that you please, please, welcome back the folks who become sick. Love and support them, touch their hands, kiss them on the cheek, and help to reintegrate them back into your world.

You don’t know what’s going to get you. That’s always been true, you’re just now having to face it. I used to feel like I knew better than most people what was likely to kill me. However, even when my condition was quite severe, I still could get hit by the proverbial bus. That hasn’t changed, and it’s true for all of us. None of us know what is going to get us in the end. We can’t live our lives dancing around the edges, hoping nothing will ever take us down. We have to live the best life we can with the life we’ve been given. Uncertainty will always be a part of the equation. Part of making the best of it is keeping that in mind and keeping it in perspective. That’s how I live my life every day, and I encourage you to do the same.

Photo description: Two wrinkled hands, one bare and one with a black and white checkered sleeve, holding each other over a leather background.

Marjorie Hundtoft is a middle school science and health teacher. She can be found picking up heavy things and putting them down again, and wondering when the gym will be closed, in Portland, Oregon.

accessibility · cycling · disability · fitness

Safe cycling is a disability rights issue

I had a bit of a moment on Twitter last week.

I shared the tweet below and added, “Indeed. I’m someone who can ride a bike 100’s of kms but can’t walk more than a single km. My bikes are many things to me but they are also increasingly mobility aids. Safe city cycling is a disability rights issue. “

Four hundred+ likes and dozens of retweets and lots of new followers later, the virtual dust settled. It seems I’d hit a nerve. The thing is safe cycling isn’t just about the young and the fit and the able bodied.

I’ve written about this before.

I started to notice it when my knee got really bad and I was walking with a knee brace and cane. On two feet I was definitely a person with a disability, recognizably so, but put me on a bike and whee, zoom! I started to ride between meetings in campus. I bike to work even though it’s just over 2 km.

Sometimes I explain when people express surprise that I ride when I live so close. Other times I just let it go.

This was all pretty natural for me. I’m a cyclist. It’s part of who I am. But I can imagine that for lots of people who pre-injury or pre-chronic condition didn’t ride a bike, it wouldn’t be obvious that cycling is a great way to get around. Lots of people, watching me walk, were shocked that I could ride a bike.

When I ride a bike for disability reasons, I feel like I’ve joined a community of people who wheel rather than walk. That includes mobility scooters and wheelchairs and tricycles. Walk your bike? Um, what if I can’t? No ramp? We’re all in trouble.

Since then I’ve bought a Brompton which I travel with so I can get around in other cities. I take it in places, folded, walking, but often it would be easier if I could keep riding. It needs an accessibility/mobility device sticker!

I see people with scooters like this one using them inside and I’m jealous.

A man with a blue shirt and khaki pants sitting on a mobility scooter.

What are the big takeaway points?

  1. Not everyone riding a bike is able-bodied in virtue of riding a bike. We often stereotype people on bikes as young and able-bodied. From this article on bikes as rolling walking sticks: “For two out of three disabled cyclists, riding a bike is easier than walking, easing joint strain, aiding balance and relieving breathing difficulties. According to recent research by Transport for London, 78% of disabled people are able to cycle, while 15% sometimes use a bike to get around. “
  2. If you have difficulty standing or walking yourself, you might be surprised at how much better riding a bike feels. In my case it takes the weight off my joints and relieves almost all of the pain. Plus, I’m mobile.
  3. For municipal planning, safe bike lanes aren’t a luxury. Lots of people need to wheel around rather than walk. Safe cycling is a disability rights issue.
  4. “Walk your bike” isn’t always a good thing. That assumes that everyone can walk their bike. That’s simply not the case.

Once I started to pay attention to bikes this way, I started notice that there are lots of different bodies, with lots of different abilities out there on wheels.

accessibility · body image · disability · fitness · inclusiveness

Better language for inclusion needed: Not “all bodies can…”

As most of you know while this blog is very much a group project, I pretty much run our Facebook page solo. (I do get some help with moderation. Thanks blogging team!) But in general I read things that I think will interest our followers and I throw them on the page pretty quickly. I make mistakes. I learn things from our readers. I apologize.

Why have the page? It’s a great way to reach a broad audience and build community. Posts that aren’t shared there aren’t nearly as well read as posts that are. Also, there are a ton of stories that come across my newsfeed that I don’t necessarily want to write about but that I think will interest our readers and followers.

Yesterday I shared this story about plus sized outside adventurers. I commented “all bodies are outside bodies.”

But of course there’s reason to be wary of “all bodies” language. Our bodies vary a lot in shape and size and ability. One reader commented, helpfully, that we need better language around inclusion. She has ankle injuries and instability and can no longer hike and misses it.

Hey, me too! I can’t walk very far these days without my knee brace and even with the brace hiking on uneven ground is out of the picture. Now I didn’t say “all bodies are hiking bodies” I deliberately said “all bodies are outdoors bodies” because I was thinking of recent attempts here in Ontario to make provincial parks and beaches wheel chair accessible.

But I get the general point. I feel it when people say “it’s never too late.” Yes, as a matter of fact sometimes it is too late. I’ll never run or play soccer again.

So we want to make sure plus sized bodies are included so we say “all bodies” but not all bodies can do all things. What’s your thoughts about better language for inclusion? Do you mind all bodies talk? How about “all bodies are good bodies?”

aging · cycling · disability · hiking · running

Aging Ungracefully (Guest Post)

By Mavis Fenn

About a month ago, my son and daughter ran the Round the Bay 30 km road race in Hamilton. A brutal course, complete with Grim Reaper. I never could have completed it. As I stood at the finish line, I marvelled at those crossing: varied in age, gender, race, and from a range of provinces and countries. Some finished strong, some not so strong, and some struggled to make that final footstep. And my heart hurt as the waves of runners crossed the line.

I didn’t understand the heartache. I haven’t run for years due to a meniscus tear and arthritis in my knees. I have large velcro braces for both knees when I need to walk for some distance, and will be trying gel injections by the end of summer. My knees are always stiff, and frequently painful. I lift weights, do yoga, and Zumba Gold (now Aqua). I intend to ride my bike this summer. My life is still an active one; why the heartache?

After some reflection, I realized that I had not yet given up the idea of running. In the recesses of my mind was the idea that I might run again if: I lost some weight, got some heavy duty running braces, and so on. That won’t work for me due to other issues. I am not a runner now and I will not be a runner in the future. That’s it.

The wave of runners crossing the finishing line destroyed my “magical thinking.” I was experiencing grief. The death of an ability; the death of something that gave me great pleasure; the death of part of my identity; indeed, the recognition that I was dying. I have experience with grief. I let it into my heart and embraced it. Grief brought with it remembrance of my father who lived until 94. He did what he could as long as he could. When a door closed behind him, he opened another one until there were no doors left. I have closed the door marked “running” behind me. I have not paid enough attention to the doors in front of me, biking and walking.

Time to move on. I will always enjoy watching that wave of people crossing the finish line at the Round the Bay but I am content not to be one of them. I am working on my fear of bike riding, and slowly increasing my walking. Endurance is the key.

Mavis Fenn is an independent scholar (retired). She loves lifting weights, Yin yoga, and Zumba Gold. She is mediocre at all of them.

accessibility · body image · disability · normative bodies · SamanthaWalsh · standing · wheelchairs

Samantha stands and has complicated feelings about it (Guest post)

By Samantha Walsh

On the weekend I went to @abilities_expo for work. It’s a trade show of disability related services and products. A company called wheelchair88 was showing a standing wheelchair. It was a manual wheelchair you could lock then move the wheelchair into a standing position. You can’t move once you are standing.

Thoughts on standing straight from someone who has never stood straight…

I forget how old I was when I stopped thinking I would be more beautiful if I was standing. I know I was older than 20, but younger than 25.

I forget how old I was when I stopped thinking I would be more powerful if I could meet someone’s eye. It was older than 25, but younger than 33.

I know as a child if asked to draw a picture of myself, I would draw a standing person. I did this till I was 6 or 7. After that I often drew people using wheelchairs, but would still draw myself standing.

I know by grade 4 I started drawing pictures of me using a wheelchair, because I started playing wheelchair basketball and often drew about that for school.

When I was young I had lots of surgery and different interventions so I could stand and walk. It’s interesting that the mark of success for doctors and therapists was always that I could hobble or shuffle. Standing would be an all encompassing lactic acid filled experience.

I am often surprised it is still the gold standard. Facebook and YouTube videos depicting folks with disabilities who vowed to walk to get diplomas; walk down isles; stand for first dances. I have adult friends whose parents refused them wheelchairs. In turn they have internalized that standing, walking, shuffling is best.

A wheelchair to me offers liberty and a stable fast painless way to move. Even with all this I was seduced by the opportunity to stand straight. I picked an outfit I was curious about seeing standing. I compelled a coworker to take pictures.

Standing felt unnatural. My head was too high. My legs don’t go straight the brace had to force them. My spine curves from sitting so it hurt. To me the social significance of standing comes from a culture that privileges a specific kind of body. I feel grateful I no longer understand my own posture as inferior.

Today was interesting…

Samantha Walsh is a Doctoral Candidate in Sociology. She also works in the Not-For-Profit Sector.

You can read all of Samantha’s posts here.

accessibility · disability · fitness · walking

Assumptions about disability and reflections about visibility

During my recent visit to Spain and France I wore my knee brace a lot. I’ve been noticing how differently I’m treated when I wear it than not, even though my knee condition is the same.

Here’s some examples:

  • I was offered a space on the motorized wagon that drives passengers with mobility needs to the gate. (I declined.)
  • I was offered a seat on a bus. (Yes, thanks!)
  • I was told I couldn’t sit in the exit row of the plane for take off and landing as they needed a non disabled person in that seat because of the responsibilities that come with the bonus legroom. (I followed instructions.)
  • I sat rather than wait in line standing at hotel check in when someone pointed out the table. (See pic below.)

The things is I can walk lots with the knee brace but it’s when I am wearing the knee brace that people assume I can’t. Without the knee brace I might have wanted assistance getting speedily to the gate. Likewise, with the knee brace I think I would be a pretty capable person to have in the exit row of a plane but it’s only when I am wearing it that I am asked to move.

I’m not sure what the solution is but I’m pretty sure it’s going to involve me being more outspoken about my needs and asking for help.

Image description: A can of Spanish fizzy water and a glass full of it on a table with a sign with a disability symbol. Check in waiting area at Hotel REC Barcelona. After two flights, one bus, and a walk, I was grateful for the cold water and for the seat.

Image description: Sam taking a selfie in the hotel lobby mirror in Girona. She still hasn’t mastered the art of looking at the mirror instead of her phone. She’s dressed all in black except for bright orange running shoes, and beautiful scarf bought in Barcelona. Oh, also she is wearing her knee brace for walking around Girona.