In my last post, I argued that beauty culture, which is supported by beautyism (a preference for “beautiful bodies”), is an artefact of ableism eugenics. In this post, I will explain why I think that choice feminism supports this ableist system. Choice feminism treats women’s choices as inherently justified and politically acceptable. If women choose to cosmetically alter their appearance, this is nobody’s business but their own. There are two main problems with this view.
First, choice feminism ignores the intersectionality inherent in the category “women.” It is patently false that women’s choices cannot be criticized as racist, heteronormative, ableist, and oppressive in other ways. Nondisabled white women, in particular, are complicit in the prevailing system of white-supremacist eugenics, because their choices routinely contribute to this system of oppression. Choice feminism shields privileged women from accountability for their ableist preferences and values. It says that women should be allowed to fear and scorn disabled (black, fat) bodies with impunity from judgment. In other words, choice feminism denies the force of the critique from Black, queer, and disabled feminists (as outlined in my last post), that the beauty industry promotes a white, thin, nondisabled appearance, and people who use cosmetic products to achieve this look are participating in a system of able-bodied privilege.
Second, choice feminism treats beautyism as a purely personal and private choice as opposed to a response to a system of oppression that compels obedience and submission. Choice feminism, that is, gets things backwards. Beauty culture isn’t the outcome of many private consumer choices, but rather a political economy that sells able-bodiedness as the onlyreasonable choice. As Robert McRuer puts it, able-bodiedness is “compulsory” in the sense that it is a condition of being seen as normal, but “compulsion is here produced and covered over with the appearance of choice…, mystifying a system in which there actually is no choice.” Choice feminism papers over the system of compulsory able-bodiedness that demands physical conformity from everyone. When women participate in this system, they are contributing to the politics of eugenics. Their choices are not independent of this system, but integral parts of it.
Having said this, it’s important to recognize that we can and should resist beauty culture. But in order to do this, we need to do two things. First, we have to admit that beauty culture is a system of oppression that stigmatizes and eliminates socially disvalued traits, which are labeled as disabilities. Second, we have to recognize that ableism, racism, fatphobia, and other prejudices intersect with each other and contribute to a eugenics culture. In this culture, being “beautiful” simply means being able-bodied, and being able-bodied overlaps with being white and gender-conforming. Having these traits confers social capital and status. Beautyism, then, is a pillar of ableist eugenics in that it selects and favors these traits. It is not a “mere preference” that consumers happen to have. It is a component part of a system of ableist eugenics that punishes and eliminates disability. Choice feminism mystifies this system by denying that women’s choices have political import. It prevents us from criticizing women’s ableist choices.
Mich Ciurria is a queer, disabled philosopher who teaches at the University of Missouri-St. Louis. Her/their research interests include moral psychology, Marxist feminism, and critical disability theory. She/they is the author of An Intersectional Feminist Theory of Moral Responsibility (Routledge) and a regular contributor to the blog BIOPOLITICAL PHILOSOPHY.
I recently came across this article on Vice.com asking filmmakers to “stop making hot actors play normal people.” I think that this is a real problem but not for the reasons most people assume. Instead, I think that mainstream beauty culture – which encompasses Hollywood cinema – is structured by beautyism, by which I mean a prejudice in favor of “beautiful” bodies and against “ugly” bodies. And beautyism overlaps with racism, heteronormativity, and, above all, ableism.
More specifically, beautyism is part of a eugenics culture that favors white, gender-conforming, nondisabled bodies, the kinds of bodies preferred by eugenicists throughout history. Indeed, disability is partly defined as white and gender-conforming.
Yet few people seem to notice this, even in feminist spaces where one would expect to find such critiques. I believe that this is largely because of the prevalence of “choice feminism,” an ideology that treats women’s choices as “[inherently] justified and always politically acceptable.” In other words, choice feminism holds that we should not critique women’s choices, no matter how problematic they may be.
Here, I want to debunk choice feminism and argue that beautyism promotes a eugenics society. I will do this in two parts. In the first part, I will explain why I think that beautyism is a component part of eugenics. This argument is supported by critical disability feminism. In the second part, I will unpack why choice feminism not only ignores these critiques, but actively silences them by presenting women’s choices as private matters that are beyond reproach.
Beautyism as ableist eugenics
First, let me explain why I think that beautyism is a form of ableism. Beautyism is exemplified in Hollywood’s preference for “beautiful” actors, as well as ordinary people’s attempts to live up to Hollywood’s standard of beauty. Beautism, as such, is an institutionalized preference for “beautiful bodies.” This preference picks out and favors certain traits over others. Which traits?
Above all, beautyism selects for able-bodiedness. It favors bodies that are “normal” and “healthy,” bodies with two arms, two legs, a symmetrical face, an athletic build, and other marker of able-bodiedness. In contrast, disabled bodies are seen as abnormal, freakish, and (hence) ugly.
These associations can and should be resisted. But to change them, we need to understand their origins in industrial capitalism, and their ongoing role in hierarchies of power and domination.
Disability historians have shown how disability came to be seen as ugly, freakish, and profane in the wake of the industrial revolution. Rosemarie Garland-Thomson traces the social construction of disability as deviancy by contrasting freak shows against beauty pageants circa 1860-1920.
Freak shows displayed disabled bodies under the guise of “armless wonders,” “Siamese twins,” “fat men,” “bearded women,” “spotted boys” (with vitiligo), and so on. In contrast, beauty pageants showcased white, thin, gender-conforming women. These two spectacles helped to solidify the notion of disability as ugly and freakish on the one hand, and able-bodiedness as beautiful and normal on the other hand. These opposing contexts also illuminate the associations between disability, blackness, queerness, and gender-variance, as opposed to able-bodiedness, whiteness, straightness, and gender-conformity.
Historically, disvalued traits of all kinds were treated as disabling conditions, and were in fact disabling in the sense that having these traits would often result in socioeconomic exclusions that could both cause disablement (due to injury and neglect) and position one as disabled (marginalized, poor).
Sarah F. Rose corroborates this analysis by tracing the source of disability circa 1840-1930 to the exclusion of non-standard bodies from the economy in the wake of the industrial revolution. Newly mechanized industries demanded bodies that could keep pace with the new machinery. Hence, non-interchangeable bodies were, for the first time, seen and treated as disabled (i.e., disposable). At this time, Black, feminine, and gender-nonconforming bodies were disproportionally disabled because they were relegated to the most disabling industries (e.g., mining, handling toxic chemicals), which solidified associations between Blackness, femininity, and disablement.
These groups were then forced onto welfare and private aid, which didn’t cover cost the cost of living. Meanwhile, white union workers were protected from disabling jobs by labor laws and collective bargaining, which ensured better working conditions, and entrenched the relation between able-bodiedness and white masculinity. In this way, disability was raced and gendered as a result of capitalist labor relations and social policies.
Sabrina Springs adds a further layer of analysis to this critique by explaining how diet culture, and beauty culture in general, emerged in the 18th and 19th centuries in response to white people’s fear of the Black body. She describes how Blackness was constructed in opposition to the ideal of Whiteness, as uncivilized, fat, unhealthy, and ugly. 19th-Century scholars wrote of “Black savages” as “stout,” “corpulent” and “excessively fleshy.” They particularly targeted Black women as exemplars of fatness, laziness, and poor hygiene – figures to be adjured by “civilized white ladies.” This racial ideology mobilized white women to invest in diet and beauty products in an effort to avoid traits associated with Blackness, particularly fatness and disability. This ideology also reinforced the notion of disability as a feature of fat, Black bodies.
These three analyses converge in conceptualizing ugliness as a social construct with roots in eugenics, a system of oppression that conflates Blackness, queerness, and disability, and punishes disability as such. While these critiques are historical in nature, they are just as relevant today as they were 200 years ago. We still live in a compulsory beauty regime that seeks to eliminate disability in all its forms. Today, people invest more than ever in diet and beauty routines that promise thinness, pale skin, a youthful appearance, and other markers of able-bodiedness. The beauty industry is a multi-billion-dollar racket that continues to capitalize on our fear of the disabled-Black-fat-ugly body, leading to an ever-shrinking range of acceptable bodies.
As Jia Tolentino puts it, social media is fueling the “emergence… of a single, cyborgian face,” one that is young, thin, and “distinctly white but ambiguously ethnic.” The more we invest in the beauty industry, the faster we approach a Gattaca-type society in which biological diversity is reviled and reduced. Note that in Gattaca, everyone is miserable – not only the genetically-unmodified “invalids,” but also the gene-edited “valids,” who feel that they can never live up to their genetic destinies or meet each other’s expectations. How much longer until scientists start using gene-editing technologies to create “beautiful” designer babies? This is the “brave new world” that Aldous Huxley warned us about, and it is already well underway with the current use of fillers, injections, surgeries, and other technologies used to erase disability. Gene-editing tools will allow parents to ensure their children’s genetic sameness at birth.
We need to intervene now if we want to prevent a slippery slope into an even more dystopian future. Scientific advances are already allowing people to use more invasive techniques to eliminate markers of disability and achieve a more homogeneous (boring and elitist) society. If we want to avoid Huxley’s prediction, we need to recognize beautyism as a produce of racial-patriarchal-capitalist eugenics, a system that abjures disability and demands bodily conformity.
Mich Ciurria is a queer, disabled philosopher who teaches at the University of Missouri-St. Louis. Her/their research interests include moral psychology, Marxist feminism, and critical disability theory. She/they is the author of An Intersectional Feminist Theory of Moral Responsibility (Routledge) and a regular contributor to the blog BIOPOLITICAL PHILOSOPHY.
This post has a lot of different things crammed into it, kind of like an average December day. I tried to make them into a somewhat coherent whole but I’m not sure it worked. Let’s roll with it anyway.
On Day 3 of her 2020 Wellness Calendar, Martha telling us to Remember to Eat. This is another one of the basic that we often let slide during this busy month. We don’t feel like we have time to sit down for a proper meal so we just grab a snack and the next thing we’re cranky and running on empty. While I get that this kind of thing will happen from time to time, please do what you can to prepare in advance. That might look like making a plan about when you will take downtime for meals or it might look like planning for something quick to eat while you are on the run.
Speaking of all the busyness of the month ahead, one of the ways I’d like you to create space for yourself today is by ditching something from your to do list.
I know that sounds like heresy when there is SoVeryMuch to do but that’s exactly why it is a good idea.
Have a look at your to do list -whether that is on paper, on a screen, or in your head and turn your attention either to the list of stuff that you will do ‘if I have time’ or to anything on your list that you are absolutely dreading.
I would like you to ditch (or at least change) one of those things.
Yes, decide right now that you are not going to do it.
If it is something on your ‘if I have time’ list, then you will be able to create a little extra quiet in your brain. You will have one less thing that can float up to fill any downtime you are trying to create for yourself. And you will feel better about not doing it if it is a decision instead of a lack of time.
If it is something that you are dreading but that you really feel needs to be done, I’m wondering if you might be able to pass it on to someone else. Could there be someone in your life who would happily take that on – maybe not exactly in the same way you do but that’s fine too. Perhaps there’s someone you can pay to do it. Maybe you can trade disagreeable tasks with someone else. Or, maybe the task itself can be changed, reduced, or reshaped to make it less dreadful.
And, I realize that in one of the paragraphs above I told you to add something to your to do list (plan for your meals) and then immediately afterwards I told you to ditch something from your list. I stand by that apparent contradiction.
Adding things to your to do list that increase your well-being and your ability to take good care of yourself are more likely to reduce your stress than increase it. Taking good care of yourself increases your capacity to enjoy the rest of the preparations that you choose to include in your month and to keep the things you *must* do in perspective.
When I prepared last year’s Making Space posts I tried to include videos of people with a range of body types and abilities. I was moderately successful but I am determined to improve things for this year.
Since today is the International Day of Persons with Disabilities I wanted to be sure to be open about my intention to be inclusive and to invite anyone who reads this to share any videos that they find useful. I don’t always know what search terms to use and I may be missing excellent videos because my vocabulary is limited.
These Making Space posts are not exactly the forum for an in-depth discussion of these issues but since I have your attention, I wanted you to know that the theme for this year’s International Day of Persons with Disabilities is “Transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world.”
I don’t think that my posts here are at all part of that sort of broad change but hopefully I can at least raise some awareness about today and give some of my readers something to think about.
I’ll be the first to admit that I know very little about disability activism but some things things I do know are 1) every person on earth has the right to live with dignity 2) change depends on listening to those with lived experience 3) any practice, policy, or accommodation that increases accessibility, diversity, and inclusion is a good thing for everyone who makes use of the service/visits the building/ participates in the activity – an inclusive world is a better world 4) inclusive practices are not about catering to anyone or providing special treatment, they are about creating a more just world.
And I think we can all be part of that change by seeking more just and equitable practices in our organizations, workplaces, and daily lives.
Okay, back to the stated purpose of the Making Space 2022 posts: short workouts and meditations to help create space for yourself on your to do list!
If you’re not feeling up to a workout today, perhaps this meditation from Headspace might be just the thing.
However you choose to take good care of yourself today, I wish you ease in the process.
So the bike rally is over and all we’re left with is a giant pile of dirty laundry… so much laundry.
We’re still waking at 6 am hungry but there’s no breakfast waiting for us.
Also, our bikes are on trucks heading home to Toronto.
Yes, we have lots of wonderful memories. See here’s me bike dancing waiting for the final stretch into Montreal.
But the day after the rally isn’t easy. But it’s especially not easy if like me you can’t walk very far at all. Yes, I can ride my bike from Toronto to Montreal but my knee is in such tough shape that I struggle to walk.
I had a miserable walk to breakfast with Sarah when Sarah spotted the Bixi bike stand. Yes, our bikes might be on trucks but we could still ride!
Breakfast was delicious and after we biked over to Bota Bota, the spa on a boat and soaked in tubs of various temperatures.
I love riding the Bixis. Mina is the Bixi Queen of Montreal but I feel like honorary visiting royalty. No helmet, regular clothes, no clip in shoes, a bike that weighs at least twice as much as my road bike, and it’s a totally different cycling experience than the rally. Not zoom, zoom more cruise, cruise.
They’re fun. But for me they’re also very much necessary. Another reminder that safe cycling is a disability rights issue. I really struggle with walking any distance these days but I love cruising around the city on the Bixis.
The past twelve months of my life have been overflowing with adventures and exciting changes. In May 2021, I began to realize that my beloved London, Ontario community would not be my home forever. But I wasn’t sure what my next steps would look like.
In late August, I hopped on my trusty pedelec (pedal electric assist cycle) loaded with camping supplies and headed north along Lake Huron. At that time I assumed I’d be back in London by November or December, but had no plans set in stone.
In mid-October, I was biking from Wikwemikong to Manitowaning when I snapped a milestone photo showing 1200km on my trip odometer. Although I continued on to Kagawong & Ice Lakes afterwards via a bus-bike combo, in many ways it marked the end (or at least nearly the end) of my first bike camping adventure.
A week later I was supposed to catch the last ferry of the season back to Tobermory… but I didn’t want to leave. In the short time I’d been on Manitoulin, I had already begun to feel a sense of belonging. Community care, breathtaking beauty, and changing scenery around every corner make Manitoulin a place unlike any other that I came across in my travels.
Several weeks of stealth bike camping increased my comfort with making decisions based on rapidly changing contexts, rather than trying to plan everything in advance. Manitoulin feels like where I need to be during this season of my life. So I took a leap and unexpectedly moved to Northern Ontario via bike camping!
As a disabled cyclist, I used to think bike touring was impossible. Most of the time when I hear/read about people bike touring, they’re riding 80-100km/day and make it seem like no big deal. That’s not currently something I’m capable of, but a few years ago – even with e-assist – riding 25km was a shocking accomplishment for me.
Last summer I rode 40km round trip to visit my Grandpa. Yes, I took a rest for lunch. Yes, I was exhausted before I got home. BUT it also encouraged me to dream bigger.
Soon after that a close friend went on a weekend bike tour… and I was super jealous. This spring a bunch of us in the local WTF (Women Trans Femme) Bike group chatted about the idea of stealth camping to make bike touring accessible with shorter distances… and I couldn’t stop thinking about it.
So I’ve quietly been planning my first solo bike tour… scouring the map to estimate manageable distances & factor in spots to charge batteries (mine & my bike’s). I leave one week today… and I can’t wait! Shorter distances & e-assist are gonna make this an amazing adventure!
My first few nights are planned, but I’ve got no plans after Iverhuron Provincial Park until I reach Little Current. So hit me up with your ideas! I’m aiming for 40-60km/day. With a full load at max assistance I’m guessing my battery charge will only go for 40km, so longer days will require a mid-day charge somewhere. In order of affordability + security I’m aiming for: friend’s backyards/Warm Showers, stealth camping/Crown Land, Hip Camp, and lastly traditional camp sites.
Oh yeah… I’ve also never gone camping on my own… or really at all since I was a teenager… so it’s going to be a HUGE learning curve! Apparently when I do something I go all in…
Here’s to trying new things, troubleshooting mishaps (because that’s going to happen many times on this adventure), and being a kick-ass woman who can solo camp & figure it out… even though I hate most bugs.
Since I won’t be on my bike more than 2-3 hours a day, I’m bringing along a few extras for fun & a low-tech mental health break. I’ve recently discovered that watercolour paints & markers give me freedom to express myself artistically without worrying so much about perfection, so I’m bringing bare minimum art supplies, plus writing materials, and a book.
Interestingly I’m equally as excited about being schedule-free, as I am about developing routines through the natural rhythms of being more immersed in nature.
I know some of you are already heating up the tar and plucking the feathers. I’m bracing for the hate-filled comments as I type this, but out of an abundance of optimism, I’m hoping you will continue reading and hear me out.
I am not going to debate the merits of mask-wearing. I would hope that by now I’ve established myself as a solid supporter of science and anti-pseudoscience (see evidence A, B). I agree with anyone who says all the evidence supports that wearing masks reduces the risk of infection for both the wearer and the people with which they come into contact.
However, when we say “everyone must wear a mask,” we are excluding people who cannot wear a mask due to various disabilities and personal challenges. Perhaps it would be “better” for them to wear a mask, but for whatever reason, they find it difficult or impossible to do so.
Unfortunately, this issue has been muddled by politics. For some reason, the man occupying the White House has decided that he’s anti-mask, and the 35% of the US that blindly follows his lead has taken up the cause. I understand that when we create wiggle room in mask wearing policies, we are creating space for people to decry their losses of personal autonomy in the face of interdependence. I appreciate that making a blanket statement that everyone must wear a mask, we are trying to make it clear to these people that if they want to do business, they need to do what’s right for the common good despite their personal attitudes on the subject.
And still, I remind you that truly not everyone can wear a mask, and I’m asking, what about them?
What about me?
I’m not sure why I find wearing a mask a challenge, but I can confirm with many repeated data points that it’s a problem for me. I nearly passed out at the grocery store on a couple different occasions before I realized that I was hyperventilating in my mask. On a recent outing, I put my mask up while I was running past a group of pedestrians, and according to my watch, my heart rate went from the mid 130’s up to a dangerous 189 bpm in about 10 seconds. It’s possible that this is due to my having a reduced lung capacity. The middle lobe of my right lung was removed many years ago, and on a good day, I get about 75% of the air of a 2-lunged person. It’s also possible that it is a manifestation of my PTSD. Wearing a mask may be triggering some element of my hysterectomy-related trauma (maybe it’s too much like wearing an oxygen mask during surgery?). Repeated attempts at wearing a mask have not made these responses easier over time. And when I talk about them, I’ve noticed some commonalities in how others deflect and deny the problem.
They downplay the seriousness and discredit my experience. “I know, they get really hot,” or “It takes me a few minutes to get used to it, too.”
They decide they know which choices are best for me. “Well, then you should just order groceries online.” “You’re obviously not returning to work then, right?”
They decide that they know which medical conditions are valid reasons and which ones aren’t. “Well, it’s actually not true that you’re getting less air.” “Maybe you just need to get used to it.”
And if I haven’t been given an opportunity to explain myself, most people apparently assume that they can tell by looking at someone if they have a valid reason for not wearing a mask. In these encounters, people just murmur under their breath, and a few times have yelled at me, “Wear a mask!” If I wouldn’t be risking a face-to-face argument with a stranger in a time when the air they breathe puts me at risk for yet another lifelong disability, I’d be more tempted to stop and debate the matter with them.
Equality and equity for folks with disabilities must include giving them the same opportunities and choices as everyone else. Not all disabilities are visible. You can’t tell by looking at someone if their experiences are valid. Trust us when we tell you there’s a problem. Don’t expect to be able to front-manage all the solutions–don’t ask for a list of “reasonable” challenges (defined by whom?) and then preload all your acceptable solutions. For example, don’t decide for me that I have to work from home, give me reasonable choices between certain accommodations at work versus the flexibility to work from home–trust that I can make the best decision for myself. Know that life gets messy and that challenges can be multifaceted and complex.
Mask-wearing is an act of both personal responsibility and a sign of our interdependence. We are being asked to wear masks for our own safety, and even moreso, for the safety of others. Just like getting our vaccinations, our communities benefit from as many of us as possible complying with public health recommendations. You are wearing a mask to keep yourself safe. You are also wearing a mask to keep me safe. Thank you for wearing one whenever you can; thank you for advocating that others wear them. But please, consider saying that “everyone who can, should wear a mask,” and grant me the autonomy to make the best decision for myself that I am able.
(Along those lines, if you are finding yourself about to post some mask-wearing advice to me in the comments, please take a moment to pause and consider if you are the right person to be offering it.)
Marjorie Hundtoft is a middle school science and health teacher. She can be found doing her best to wear a mask as much as she can, picking up heavy things and putting them back down again, in Portland, Oregon.You can now read her at Progressive-Strength.com .
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.
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.
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. You can now read her at Progressive-Strength.com .
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 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.
What are the big takeaway points?
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. “
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.
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.
“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.