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.

accessibility · disability · fitness

Immigration museum and the fitness test: Sam wonders about failing

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Walking in Central Park (Sam) #fitisafeministissue

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So I was the fittest I’ve ever been in my life at 50 but I am still wondering about the various meanings of “fitness.” I’ve been thinking about it lots in light of arthritic knee, recent limits on my mobility, and my knee brace. (See snazzy knee brace photo above.) Am I really fit if I can’t run? What if I can’t walk very far at all? My body performs pretty well, given its limits, but sometimes I am not so sure how to think about those limits.

What prompted it most recently was a trip to Germany to visit the University of Bremen, a university with which Guelph has an exchange program. I blogged about biking in Bremen here.

But it wasn’t all bike riding and meetings and dinners. We also had one day for group tourism and so took the train to Bremerhaven with an exchange student from Guelph to visit the German Emigration Center, a museum dedicated to the history of German emigration, especially to the United States. It is Europe’s largest theme museum about emigration.  Here is a NYT piece on Bremerhaven.

In the museum, visitors can experience the emigration process through interactive exhibits.  We walked through the docks and visited a ship and could see all the various classes of rooms. We then exited in New York. In New York immigrants were examined on Ellis Island. Part of the test included climbing a steep flight of steps. Potential immigrants were observed and given a score for “fitness.” I thought about that while visiting the museum and climbing the steps because my knee was particularly sore that day. I could barely put weight on it and stairs were a real challenge. There was an elevator but you had to leave the interactive tour to go find it. Instead, I took the steps slowly, one at a time, and thought about almost certainly failing the immigration fitness test. I’d be seen as a burden.

Of course, it’s not just history the link between disability and immigration. It was only this year that the Canadian government ended barriers to immigration for disabled immigrants.

From the article linked above: “After four decades, the federal government is getting rid of rules that turned away would-be immigrants with intellectual or physical disabilities, Immigration Minister Ahmed Hussen said Monday.The government will no longer be allowed to reject permanent resident applications from those with serious health conditions or disabilities. Most of those impacted by the policy have been economic immigrants already working and creating jobs in Canada, but whose children or spouses may have a disability, Hussen said.”The current provisions on medical inadmissibility are over 40 years old and are clearly not in line with Canadian values or our government’s vision of inclusion.”

And lots of countries still have limits on immigration that rule out people with disabilities. It’s unlikely they use the “observe the person walking upstairs” test but it doesn’t matter. It’s still unjust.

 

Image result for immigration museum bremerhaven

accessibility · aging · cycling · disability · fitness

Bikes as mobility aids: Another reason to prioritize cycling infrastructure

I came across this article the other day on “rolling walking sticks.” It’s about the number of disabled people in Cambridge who get around on a bike.

From the article: “Riding a bike may be easier than walking for two-thirds of disabled cyclists, but they often remain invisible to society. Many don’t realize that more than a quarter of disabled commutes in this university city are made by bike.”

Lately I’ve become one of those people for whom riding is much easier than walking. I ride my bike sometimes when walking isn’t an option. I often find myself wishing I had my bike with me. Lately I’ve even been shopping for a foldable, take anywhere bike. It would be nice to have a bike to ride between meetings, that I could easily take into the meeting when I got there.

In Australia, at ANU, the philosophy department had a bike for riding across campus. It had wide tires and a big basket on the front. Since all university departments had them there was never a need to lock it. Maybe Guelph could go that route?

My first experience riding with someone with a disability was very striking. While in Canberra, Australia I rode bikes with Michael Milton, a world record holding cyclist with one leg. Milton’s a serious athlete. He also holds the world speed record for downhill skiing. We were both members of the Vikings cycling club.

Here’s his impressive Wikipedia bio: “Michael John Milton, OAM is an Australian Paralympic skier, Paralympic cyclist and paratriathlete with one leg. With 6 gold, 3 silver and 2 bronze medals he is the most successful Australian Paralympic athlete in the Winter Games. ”

He’s also a really nice person to ride with.

One of the interesting things about Milton is that he doesn’t have a prosthetic leg for riding so when you’re riding bikes and you stop for coffee, he still gets around by bike. The bike comes wherever he goes because in addition to a go fast cycling machine, it’s also his main mobility aid. It goes in schools and shopping malls.

On a bike trip a few years ago, I noticed that the two oldest riders in our trip had a very hard time walking. They limped. They couldn’t do stairs. Off their bikes they barely looked mobile. But on their bikes, whoosh!

We jokingly called them Statler and Waldorf. They arrived each night for dinner in PJs. One was a widower and the other’s wife wasn’t well enough to holiday anymore. So the two joined forces and took biking holidays together. They had great stories of trips they’d done together through the years.

We were riding 70-100 km a day, including some serious hills, and they had no problem. I started to wonder how many seniors with walking issues might do well to switch to two wheeled transportation.

Again from the article on bikes in Cambridge: “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.”

It seems to me it’s another reason to put priority on bike infrastructure. If there are people, like me, riding because walking isn’t an option, then we need to make riding safe and accessible for all.

See Elly Blue on bike riding, disability, and infrastructure.

In my own case, it’s part of an evolving love story between me and bicycles. It’s been about transportation, about fitness, about friendship, and about performance. What’s new is thinking about bikes as mobility aid that help me get around when walking just won’t work.

body image · disability · fitness · SamanthaWalsh

Thinking About The Opportunity to Become Living Art: Other Sam Gets Body Painted (Guest Post)

by Sam Walsh

As someone who studies Sociology and has a visible disability (I use a wheelchair), I have always been interested in the relationship between culture and the individual (the body). I would suggest that my body falls outside the expected norm. I am often aware of strangers staring at me. I know people watch me get in and out of the car. I have had people come up to me at times and comment on things I am doing, things that I feel other people would go unnoticed for. I am also continually asked if I need help when out in public. I often wonder about how this frames my position and my body in society. As a bit of a hobby, I find ways to subvert or disrupt how my body is read or how people interact with me. I wear a lot of interesting shoes, because I feel it draws attention to a part of my body that makes people uncomfortable. Often when people ask if I need help, they will assume I want a push. My wheelchair doesn’t have push handles (specifically for this reason). I often get people to do things such as hold my coffee or purse while, I push myself. Someone once asked if I needed help while getting out of my car. I said yes and asked them to throw out my empty coffee cup. This interest in subversion and performance lends itself to a love of art and larger than life persona. I am fascinated by the work of Frida Kahlo. I appreciate contemporary art and performance. A recent fascination of mine was Body Painting. The idea of living canvas, inspired thoughts of Marchesa Casati. I applied to be a Body Painting Model for New York Body Painting Day. The application required a short paragraph about why you wanted to be a model.

I wrote,

I have become interested in body art and body painting as a way of reclaiming and redefining beauty. I am a woman with a disability. I have had the opportunity to do some modeling for a painting class. It is through this experience, that I have been able to understand my disabled body as both worthy and beautiful. I see participating in the body painting parade as a way to explore and shift the taken for granted understanding of the disabled body. I want all who see me in the parade to stop and think about how, the juxtaposition of art or a disabled body disrupts the taken for granted notions of disability as sickness or weakness.

I was ACCEPTED!!!

On July 14 2018, I got my chance to be living art as it were. I was a model for New York Body Painting day, held in Greenwich Village. The event was hosted by Human Connection Arts. The artist who painted me was Lisa Fried a painter and photographer from New Jersey. The event for me was about being living art. As mentioned above, I was really interested in disrupting the tensions between staring and disability. I was also curious about the tension between disability and beauty. The reactions from people were incredibly diverse.

Elisabeth and Sam, photo by Lisa Fried

The day started with being painted in Washington Square. This process was surprisingly interactive, because there was a crowd of onlookers for most of the day. It felt very avant-garde. I assume this must have been what the art models of the impressionist period felt like. This was my favourite part of the day. The artist painting me was very friendly and interested in hearing what I liked. She took inspiration from my mermaid tattoo. I explained that if mermaids were on land they would need wheelchairs. Additionally, the crowd for the most part seemed really engaged in watching the artistic process. Most people who were watching seemed embarrassed when I waved or smiled at them. For a lot of the process, I was naked, so I am curious if my acknowledgment that they were, there made salient that I could see them and they could see me. Lots of people both hired by human connects arts and random people took pictures. Interestingly I don’t think I am very good at having my picture taken. I tend to look directly at the camera if I want my picture taken and down or away if I am not consenting to the photo. This lead to a lot of very forced looking or posed photos. I wanted my image captured by all the body painting day photographers. However, I was less comfortable with the people at the park taking photos. It was a very Derridean experience. I wanted people to read and appreciate my image (story) one way, but really had no control over what on lookers or by standers thought.

Following the painting there was a photo shoot in the park which was largely inaccessible for someone who could not walk. All the models were asked to climb into a large fountain. This was frustrating because, I wasn’t included in the photos and by extension either was Lisa’s art. It was an interesting experience that in an environment that included so many people, and bodies a disabled body was unimagined. I brought my good friend Elisabeth Harrison with me who facilitated much of my access for the trip. I am very please to have such a good friend and ally.

After the photo shoot there was a parade and a bus ride through Greenwich Village. This was noteworthy, because it was a time, when I got to interact with both the public and the other painted models. Continuing with the theme of a Derridean experience, I elicited shock and awe from on lookers (the reaction I wanted). I had lots of people tell me how awesome I looked. People called out they wanted be painted too. However, I was also surprised how many people read me as needing help, or out of place. Lots of people asked if I needed help. Another, painted model explained he knew someone who used a wheelchair (they weren’t there; he just wanted me to know, he knew someone). There was however, another model there who used a wheelchair, she seemed very nice. An on looker called out “hey there’s a wheelchair”. Lisa the artist who painted me asked if I felt people were hesitant to look at me; when ironically, I might get looked at when not painted. I thought this was a good question and interesting observation. I am not sure if the reaction would have been different or more pronounced if I was walking vs. rolling. I appreciated the opportunity to experiment. I feel that for many on lookers I did disrupt the social position of disability, beauty and art. As with most art it goes out into the world. The arts has a story an interpretation. It lives within its time and context. I was living art. I had my goals and intentions for the day. I have my perceptions and readings of peoples reactions. I will never really know who was inspired; who was horrified and who was moved. Everyday I put my ideas and thoughts out into the world and everyday I have no control over what comes back. On a sunny Saturday on the Lower East side of New York, I put not only my thoughts and ideas out into the world but my body; and had no control over what came back. I will never forget the time I was living art. I am grateful to all involved including Lisa Fried and Human Connect Arts.


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