I'm not sure if this counts as being "left out" as human, but eh, here goes.
No one prepares you for the penultimate phase of aging. There is some vague knowledge of that final stage: you'll maybe wear diapers and need help with showering and taking medicines. Most folks I encounter seem to assume that they will just have to enter a nursing home at that point. For many people, that may be the best option. Yet often that phase of highly intensive care is 3 months - 3 years long. There's a stage prior to that where additional help is needed, but full-time care is not. You are able to get dressed on your own, maybe you have no incontinence, but your executive functioning has declined. This is the stage where parents need their children to help. The burden of care is not so extreme, but things become increasingly hard to navigate solo. This phase can easily last 10+ years.
You go to a doctor's visit and you're not able to get much out of it. The doctor maybe said 10 different things, but you fixate on 1-2 of them (which aren't the most important things). You have an erroneous medical bill for a rental device that was returned, but you don't know how to send the photo of the receipt on your phone to the credit card company. You get stuck when some stage in the process requires you to use your online account, and you don't know how to dig through menu options to find the dispute form. Your claim for a prescription to be covered by Medicare was rejected, as was your appeal, and now you wonder if you should even bother trying to get this prescription. It takes multiple phone calls to various agencies to begin the process, and requires a very direct conversation with your doctor about a possible error they are making. You feel nervous driving even though you haven't been in an accident, and you don't know how to call a Lyft on your phone yourself.
These are all examples from my grandmother who is 86 with a terminal lung condition, and who moved in with us one year ago. She's in such good shape otherwise. She is very sharp in lots of ways and manages her brand new Apple watch (which has fall detection and she uses for its oxygen detection). She still balances her own check book! But we easily put in 2-5 hours a week of helping her with these little tasks that start to add up, and her other children easily contribute a combined 8+ hours a week to helping her or visiting her. People can slow down very unevenly, so it's hard to predict exactly when and how they will need care.
We know that we are the outliers when it comes to Americans, but I just can't wrap my head around how much other families have isolated their elderly members. I have regularly suggested that it's a good idea to have more children so that you can have more assistance when you are older. The general response is "I don't want to force my children to change my diapers." When grandma gets to that point, we'll hire a different caregiver (not that I'm above changing diapers, but that I'm busy with the baby's diapers!). No one seems to consider that they may slow down and need help a decade before diapers enter the equation.
You are absolutely right. It seems to me like part of the preparation is asking for help in small things, so it's part of our lives for a long time, not a sudden transition or a "now is the time I need help" decision.
Part of it is asking for help in those ways, but also I think a lot of older people struggle to ask for help in such matters. I think as children we have to become aware of when our parents are beginning to struggle, but maybe aren't ready to admit it?
I know a lot of middle aged people just become very frustrated when their elderly parents "won't" do something or when they are acting a little spacey, instead of being their usual competent selves. Most people are in denial about their spouse's or their parents' diminished capacity...
It's a really good point that counting on your children for assistance when you're older does NOT necessarily mean that your children will be helping you with personal care tasks (which is often unreasonable or simply outside the children's physical strength or medical expertise). It's attending their doctor's appointments, being their medical advocate, managing their finances once they become unable to, and making sure that they are not lonely or isolated during periods of cognitive decline.
As a result of living in a close-in, gentrifying suburb of a major metropolis, it seems like I see every stage and mode of being that is not “default male professional worker in his 30s” erased. Perhaps that’s an exaggeration, but it often feels that way at times! It pops up a lot in local design choices - policies, programs, buildings. A new apartment building will have a dog park and a pet washing station planned, but no playground. The streets will get plowed but people using wheelchairs or pushing strollers get left stuck with frozen slush in the curb cuts. There’s talk of making the municipality “for all” but the definition of all — or human — doesn’t extend to the very young or very old, caregivers, etc. The given neutral state is unencumbered and unattached, and then maybe we try to accommodate other situations instead of designing universally from the start. Except most people have some encumberments, so the “all” ends up being very limited.
Mar 15, 2022·edited Mar 16, 2022Liked by Leah Libresco Sargeant
"The lively health we experience for a time as teenagers and in our early twenties is not the way our bodies will work for the rest of our lives. It is not what we had at the beginnings of our lives. We do better with a supportive culture for all persons and capacities, rather than an expectation we’ll sustain that sort of strength forever.
"What stages of life do you see erased from our definition of human?"
I realize that it is overlooked *because* lively physical health is so much the norm for teen and twentysomethings, but illness in the teens or twenties that is neither "psychological" nor "serious" gets overlooked. Youth with an obviously life-threatening disease like cancer, or in something visible like a wheelchair, we get. Youth with mental-health or substance-abuse problems, we get. Youth that are "merely" chronically uncomfortable in a non-psychosomatic way, we don't get. Indeed, chronic discomfort among youth that isn't obviously fixable is likely to be framed as psychosomatic, especially for young women.
The teens and young adulthood are seen as times of emotional drama and testing boundaries. Youth that age complaining of, say, chronic headaches, could be emotionally overwrought or testing the boundaries of how hard they're supposed to work or how "normal" they're expected to act. They *could* be drug-seeking. Or maybe the problem is a drug they've already sought, and they're just chronically hungover.
If you're that age and physically run-down, you might get a lot of "Just wait till you're older!" jokes. And yeah, mechanically, bearing burden X in a body that's otherwise young likely does beat bearing burden X in a body that's otherwise old. Socially, though? People expect you to have that healthy youth, and judge you accordingly, right down to supposing youthful oat-sowing. "Failure to launch" is seen as youthful folly, something to be gotten over. Not as a result of intractable physical limitations. And, to be fair, easily-identified limitations are accommodated with disability law these days. That youth sometimes just sucks for non-obvious reasons not related to your drama or poor choices doesn't really compute.
As a mother of a young lady (18) who has had dysautonomia for two years, I appreciate you pointing this out. Her condition is debilitating and has gradually worsened, and she is so self-conscious about how people look at her when she needs to sit down or go home early.
This is a little different than what you've brought up about age or illness, but having a visible difference (a birthmark that covers about a third of my face) is similarly dismissed as not normal and people like me are routinely dehumanized. Studies suggest that the average human being looks at birthmarks like mine and makes conscious and unconscious judgements about my competency, reliability, and trustworthiness by the sight of my birthmark alone. In similar ways that wrinkles or not participating in "baby Botox", I'm viewed as less than professional with my natural face, no matter my age. Movies and TV shows often use facial differences like mine to indicate moral corruption (Scar, from Lion King, for instance.) Makeup companies will promise me that I will "self-actualize" if I use their foundation to cover up "imperfections." I've been told, also, that I will never be successful in dating unless I hide my birthmark because "no man will want to talk to you unless you hide it first." And my birthmark isn't even that disfiguring, some people barely notice it, but even if it was, there's no excuse to treating people with anomalous facial features as less than human.
My daughter has a facial hemangioma. In her case, it risked growing and interfering with eating or breathing, so we’re treating it to arrest the growth and hopefully shrink it. But it was striking to me how much the specialty clinic where she’s seen and one of the patient advocacy groups put emphasis on how she’d surely encounter psycho-social difficulties if we didn’t treat it.
I'm really sorry about the way people have reacted to your birthmark, Sarah, and to your daughter's condition, Claire. I've run into this kind of reaction (at a much lower level) since I am missing a tooth, and was *heavily* pressured by a dentist to do a taxing oral surgery to get a *prettier* way to fill the gap rather than my totally sufficient bridge. He came out of the office to talk to my mother to try to stop me from "ruining my life." (My life and I are fine).
I'm so glad you commented!! It is, for sure, an underdiscussed stigma. One of the things I've learned: your support, positivity, and acceptance is key to helping your daughter developing good self-esteem. It sounds like you are already very supportive. :)
You and your daughter might appreciate some of the resources at Changing Faces, which is a UK-based charity about advocacy and support for people with visible differences: https://www.changingfaces.org.uk/
I also enjoy the community at Beautifully Blemished on Instagram, which is run by a woman with my same type of birthmark, but works on support and spreading birthmark/skin positivity among all types: https://www.instagram.com/beautifullyblemished365/?hl=en
Mar 15, 2022·edited Mar 16, 2022Liked by Leah Libresco Sargeant
In addition to those who suffer from physical "un-health" in various ways, this conversation reminds me of what it's like to love and live with someone who is mentally ill. My brother suffered from mental illness and addiction before he died by suicide some years ago, and members of my immediate family persevere every day in this particular kind of internal suffering. The pervasive assumption is that their illness is "not them," (which is both true and untrue, as if there is a kind of Platonic form in which they are Healthy and not Sick, instead of the reality we are dealing with just as it is). These narratives around health-as-standard also serve to emphasize my virtue, making me out to be a rare person willing to *bear* with the clinically-verifiable health-related imperfections of others (rather than the alternative, which I assume is merely permitting my loved ones a handful of idiosyncrasies and ticks before they become burdensome to me?).
This portrait of a healthy person virtuously agreeing to live alongside an unhealthy person takes many forms. I think of the differently-abled couples make a living through instagram posts about "finding love" despite the wheelchair (etc.), for example. The parent who gives up “everything” (usually meaning ambition or lifestyle) to care for their sick child. Those examples are worth celebrating in terms of overcoming difficulties not required of most, to be sure! But I don't know that I've ever seen folks enthusiastically share that they are opting into 'differently-healthy relationships' when it comes to those mental health issues: addiction, depression, anxiety, OCD, schizophrenia, and so on.
Overall I find my humanity and that of my loved ones diminished by these social narratives that presume some pristine model of health as the standard. I am not saintly for loving sick or unhealthy people (no matter the form their sickness takes), and sick people are not *not themselves* by virtue of illness.
You remind me of friends who lost their medically fragile 4yo recently. Everyone kept telling them how heroic they were in their care for him, and their response was always along the lines of, "We are the blessed ones to have known and been loved by him."
My immediate reaction, from a perspective of Christian theology, is about the tension between *what is*, *what should have been*, and *what will be*. It’s true that we will all age and die - but was it supposed to be that way in Eden? And what does it mean for our human relationships to hold the reality of fallen bodies in tension with the promise of resurrection bodies? I don’t have specific answers; this is just what I’m thinking about. Actually, as I’m musing, probably the first place I’d look for answers is how Jesus dignified sufferers in his Incarnation and how he inhabited his own body.
I'm actually going to quibble about lively health in one's early twenties! After years of lugging around a very heavy backpack (big huge laptop) and then working part-to-almost-full-time in a coffeeshop (very on-my-feet job) I was struggling with bad knees in my early twenties; one felt arthritic, the other was twingey or painful when I favoured the first too much. But because I was supposed to be Young and Healthy, if I spoke about my aches and pains to someone older than me, they'd brush me off: "oh, you're too young to ache that way." The more I think about our presumptions and expectations of Health, the more I am reminded that, in the words of at least one of my friends who's done work with disability advocacy: the disabled community is the one minority anyone can join at any time.
“What stages of life do you see erased from our definition of human?”
Not so much a stage, but lived circumstances. Incarcerated for heinous crimes—not human anymore. Registered sex offenders—nope! People who suffer drug addiction to the point of living in the streets—not human. If a person’s circumstances invoke a strong sense of disgust, they lose their humanity because they’re not “clean. “ I learned of this from Dr. Jonathan Haidt whose a moral psychologist.
Do you work to hide parts of what it looks like to be a person of your age / your capacities?
I’m pretty fit—for an older woman. I’m pretty proud of that actually. I don’t think I hide anything... but I do like skin care products that help keep my face from looking dull. When I’m dehydrated, it definitely shows up in my face. I look “older” I suppose, but what I see is the need to drink more liquid.
Maybe a little tangential, but the other week I cared for (I'm a hospitalist) a registered sex offender who'd had a catastrophic illness and was now incapacitated, but unable to find care because he was on the registry.
I knew what he had done (at one point I needed to look it up while talking with a nursing home) but also got so, so angry on his behalf. It seemed so obvious to me that despite his crimes (which were indeed truly awful; among the most awful of the awful) he was still a member of the human race and someone should agree to change his diapers rather than cite "liability."
I called legal aid. I called the public defenders' office. I gave his wife my direct line. I argued with nursing homes. I went out of my mind just trying to find him a stupid call bell that he could actually press when the bed needed changing. At one point I had tears in my eyes because I was so infuriated at the dehumanization of this man.
And I also felt guilty for doing those things, hideously so, and dirty - as if my caring for him was a betrayal of his entirely innocent victims.
I felt so awful I took it to confession to talk it over with a priest. He was very helpful for me in terms of understanding why I felt so dirty when I knew intellectually I had done nothing wrong; he said, basically, that our culture dehumanizes sinners and that between that and our own fallen natures we tend to do the same thing ourselves, until Christ forces us to confront that in ourselves. He told me that what I was struggling with was the process of confronting it. He told me that many of the saints struggled with similar feelings (and directed me towards various writings of various people which I have 100% not followed up on yet).
I guess my takeaway and the point of this comment is that his point about "confrontation" really rang true for me. Probably a lot of the disgust and contempt and just plain avoidance shown towards certain circumstances or situations is because looking at it in the Other forces us to confront it in ourselves.
Thank you for your care for this man. It's a serious crime, but that does not make him unworthy of basic care. It's also a big problem when housing restrictions for sex offenders are so tight that some become homeless.
This is such an excellent point. I have siblings who have, at various times of their lives, been incarcerated or tarred as drug uses. They were not necessarily dismissed as nonhuman but as lesser humans by many and sometimes, even by me, something I hated in myself. I was angry I suppose. I am grateful for the closeness we’ve reached now, at this stage of our lives, and for helping me to see that what I saw in them I feared in myself. I have watched them insist on their own humanity in the face of those who would rather simply not see them at all. I have learned a tremendous amount from them that I feel I am calling on now as I age and become less visible.
I kind of have a "thing" about letting my age show. I feel like I've worked hard to get to where I am in terms of life experience/wisdom/etc (I'm 48, I imagine I will feel even more this way over time). I don't cover my gray, I don't wear makeup, etc. I'm proud of the stretchmarks my four babies gave me. In my own little way, it's how I try to represent the okay-ness of looking older than 30.
I can't speak for myself, but I can relate an amusing (and illustrative) anecdote: I was chatting with my best friend's wife on Ash Wednesday via text when she mentioned that she had McDonald's for breakfast and chicken soup for lunch. I was of course missing food, and especially meat, so I joked that she was torturing me with the mention of all these delicious things which I could not consume for fear of breaking the Lenten fast. Her good-naturedly sarcastic response was "Imagine being male with no health problems and never having excuses to not have to fast or abstain." That made me realize that I was treating my situation (a 20-something bachelor with a desk job and no major health problems) as the default and her situation as the weird abnormality. And while some of her specific health issues are uncommon, health issues in general aren't, as I can see from looking at my parents, siblings and friends. By rights I should see my situation as strange, being as it is a product of age, location, upbringing, and genetic luck, all of which are mostly out of my control. But of course, when you look at the media and cultural portrayals, my situation of being young, healthy, and unattached is precisely what's normal. Even the various drug commercials aimed at what might be too-glibly termed "old people problems" show said old people acting like healthy 20-somethings: dancing, eating, drinking, playing sports, traveling, having and enjoying sex. If you think about it a moment, it doesn't really make sense, but there's a very strong cultural push to see what is usually a brief period in most people's lives as the default, the norm, the ideal. I know that I've unwittingly thought and acted that way myself because it's just so pervasive, and I'm not sure where one would start counteracting that at a cultural level, but I can certainly try to be more mindful of it regarding friends, family, and others I might encounter.
ah, as if aging were not 'normal'. however, what we are really talking about here are expectations. there is little to no expectation that the mother of a baby or toddler will have white hair. i was challenged several times when i told people who assumed the kids were my grandchildren rather than my kids. 'well, i guess they COULD be your children!' was one of my least favorite challenges. turns out this really hurt my then 7 year old - so i did what my own mother had done when my much younger brother complained about having OLD parents (37 yr old mom and 35 yr old dad), mom with white hair and dad with no hair. i began to dye my hair. the sun had already done its damage to my skin. had i needed to rely on my sole income, there's no doubt i would have been dyeing my hair all along. being perceived as old is anathema for a women in the work force - in my field and in every other one i can think of. not so for many men. i'm not a fan or botox or most other cosmetic fixers because i believe them to be hazardous and to look quite artificial - ugh those lip fillers! but, i refuse to judge anyone who feels the need to maintain a more youthful appearance to remain competitive today. i was always fortunate to not feel that way. now that i have difficulty with tech and pickle jars, oh, how i wish an injection would fix those problems! alas, no such cures avail.
"Phases of life" and "stages of life" are so culturally defined that when we live in a culture, we learn them as "the way things are." But "normal" is the cultural average, not a biological imperative or the same as "normative." Some people over 90 perform athletically better than a some "average" people decades younger. I think it's important to keep a skeptical and flexible outlook when someone says "well this is just what teenagers are like" or "people over 60" or people in their nineties. Etc.
I've studied the books by neuro-anthropologist Mario Martinez, plus his course on Centenarian Consciousness, about how we can recognize and unlearn some cultural imperatives that keep us boxed in. https://www.biocognitiveculture.com/library
I can't imagine anything that could happen to a human being, or anything about a human being, that would make me see them as "less human." I hate it when I hear someone say "oh, my mother/grandmother/sister/spouse has Alzheimer's and they're not really there any more." No way! They just don't fit the ideal picture the speaker has in mind as the way they ought to be. Or "this child was born unable to do X so he just belongs in an institution." I know caregivers who would be quite angry to hear that said. The homeless addict who will do anything for heroin? How very human.
You're obviously correct that humans naturally go grey and get wrinkled as we age, but we're also naturally the only species that has the scientific curiousity to develop botox, or the drive towards beauty to create fashionable clothing that do more than simply keep us warm. Alienation from the organic is just as much a part of our nature as the fact that we are ourselves organic. Some of the earliest preserved bodies we've found had tattoos, every culture has done some form of body modification, etc. We can weigh the tradeoffs (botox is riskier and costlier than I would want to normalize), but why not dye your hair, or whiten your teeth, or etc. Etc. I'm not banging the "makeup is empowering" drum because the expectation that women do certain things is obviously coercive, and unevenly so, but treating "natural" beauty as somehow more morally valid than beauty achieved through technology reminds me of those jokes about taking women swimming on the first date. Science *is* natural, for us as humans. Artifice is in our nature.
I don't know if I would say 'artifice' is in our nature - but *art* definitely. Creating physical manifestations of ideas is a delightful part of what makes us human. Including on/in our bodies!
I think there's a question of the motivation - as you point out, wearing make up or 'baby botox' pursued because of damaging norms and coercion. And a related question about how societally we assign value in the first place (on "beauty" period, natural or not).
I'm very much of the mind that the society we should strive for is wildly accepting of people regardless of appearance or ability - including people who wear flamboyant make up or get neck tattoos.
This makes me always more in favor of noticeable, more extreme makeup, than "no-makeup makeup." The former seems much more like the face as artistic canvas, the other relies on disguising the artifice ("I woke up like this!").
What stages of life do you see erased from our definition of human?
My thoughts: I'm not seeing it, perhaps because I have always been connected to aging elderly relatives. Most of the people I know have had that experience as well.
The only erasure might be their absence from the public sphere as their disabilities make it harder for them to get around. They remain homebound. But they are seen when they go to their doctor's offices.
Among the instances I can think of, one was an absolute necessity. The friend's elderly mother had dementia and was absolutely immobile. Others, their vanity might deter them? If most people knew you when you were middle aged and vibrant, it might be hard to face them when you can't get around like you used to. Or if getting a wheelchair is a hassle, why bother?
Do you work to hide parts of what it looks like to be a person of your age / your capacities?
My own vanities? Coloring my hair is one, I suppose.
When I was watching Downton Abbey, I remember being surprised by how often someone who obviously just wanted to leave the conversation used "I have a headache" as an excuse to step out. I remember thinking, you're allowed to tell people that?! As someone with multiple chronic illnesses, I live in this area where I can more or less function normally, have a professional job, that sort of thing, but my body requires a lot more maintenance and rest than I feel it's acceptable to admit. Twice I quit jobs because I was pregnant and it wasn't the delivery but the first trimester that hit me like a train and I wasn't able to do my work. I'm all for maternity leave but I'm even more for a total revamp of the structures of professional work. People who aren't at peak productivity all the time often have a lot to offer in terms of professional skill and ability and expertise but it's often hard for us to fit into existing structures. Sometimes it's because ordinary, healthy things like pregnancy are just plain hard, and other times it's because of a chronic illness that isn't going to go away. I would be able to do a lot more good for the world with my professional skills if the structures could flex to fit people like me.
I see old age and wisdom as being erased. We seem to have a fixation on youth. Being young is fine, but I appreciate growing older. I am more comfortable in myself and far less anxious. THings going wrong is less worrying as it has happened before. I will admitt that the fine lines and stray grays are uncomfortable, however, I do like faces with character. We should celebrate the wisdom that comes from experience instead of chasing the fickleness of youth.
I'm not sure if this counts as being "left out" as human, but eh, here goes.
No one prepares you for the penultimate phase of aging. There is some vague knowledge of that final stage: you'll maybe wear diapers and need help with showering and taking medicines. Most folks I encounter seem to assume that they will just have to enter a nursing home at that point. For many people, that may be the best option. Yet often that phase of highly intensive care is 3 months - 3 years long. There's a stage prior to that where additional help is needed, but full-time care is not. You are able to get dressed on your own, maybe you have no incontinence, but your executive functioning has declined. This is the stage where parents need their children to help. The burden of care is not so extreme, but things become increasingly hard to navigate solo. This phase can easily last 10+ years.
You go to a doctor's visit and you're not able to get much out of it. The doctor maybe said 10 different things, but you fixate on 1-2 of them (which aren't the most important things). You have an erroneous medical bill for a rental device that was returned, but you don't know how to send the photo of the receipt on your phone to the credit card company. You get stuck when some stage in the process requires you to use your online account, and you don't know how to dig through menu options to find the dispute form. Your claim for a prescription to be covered by Medicare was rejected, as was your appeal, and now you wonder if you should even bother trying to get this prescription. It takes multiple phone calls to various agencies to begin the process, and requires a very direct conversation with your doctor about a possible error they are making. You feel nervous driving even though you haven't been in an accident, and you don't know how to call a Lyft on your phone yourself.
These are all examples from my grandmother who is 86 with a terminal lung condition, and who moved in with us one year ago. She's in such good shape otherwise. She is very sharp in lots of ways and manages her brand new Apple watch (which has fall detection and she uses for its oxygen detection). She still balances her own check book! But we easily put in 2-5 hours a week of helping her with these little tasks that start to add up, and her other children easily contribute a combined 8+ hours a week to helping her or visiting her. People can slow down very unevenly, so it's hard to predict exactly when and how they will need care.
We know that we are the outliers when it comes to Americans, but I just can't wrap my head around how much other families have isolated their elderly members. I have regularly suggested that it's a good idea to have more children so that you can have more assistance when you are older. The general response is "I don't want to force my children to change my diapers." When grandma gets to that point, we'll hire a different caregiver (not that I'm above changing diapers, but that I'm busy with the baby's diapers!). No one seems to consider that they may slow down and need help a decade before diapers enter the equation.
You are absolutely right. It seems to me like part of the preparation is asking for help in small things, so it's part of our lives for a long time, not a sudden transition or a "now is the time I need help" decision.
Part of it is asking for help in those ways, but also I think a lot of older people struggle to ask for help in such matters. I think as children we have to become aware of when our parents are beginning to struggle, but maybe aren't ready to admit it?
I know a lot of middle aged people just become very frustrated when their elderly parents "won't" do something or when they are acting a little spacey, instead of being their usual competent selves. Most people are in denial about their spouse's or their parents' diminished capacity...
It's a really good point that counting on your children for assistance when you're older does NOT necessarily mean that your children will be helping you with personal care tasks (which is often unreasonable or simply outside the children's physical strength or medical expertise). It's attending their doctor's appointments, being their medical advocate, managing their finances once they become unable to, and making sure that they are not lonely or isolated during periods of cognitive decline.
As a result of living in a close-in, gentrifying suburb of a major metropolis, it seems like I see every stage and mode of being that is not “default male professional worker in his 30s” erased. Perhaps that’s an exaggeration, but it often feels that way at times! It pops up a lot in local design choices - policies, programs, buildings. A new apartment building will have a dog park and a pet washing station planned, but no playground. The streets will get plowed but people using wheelchairs or pushing strollers get left stuck with frozen slush in the curb cuts. There’s talk of making the municipality “for all” but the definition of all — or human — doesn’t extend to the very young or very old, caregivers, etc. The given neutral state is unencumbered and unattached, and then maybe we try to accommodate other situations instead of designing universally from the start. Except most people have some encumberments, so the “all” ends up being very limited.
Excellent point, and reminds me of this recent thread from Addison Del Mastro https://twitter.com/ad_mastro/status/1503861992637046788
yes, I love his newsletter for observations on the built environment. loved this related piece:https://thedeletedscenes.substack.com/p/the-intersection-that-taught-me-critical?s=r
"The lively health we experience for a time as teenagers and in our early twenties is not the way our bodies will work for the rest of our lives. It is not what we had at the beginnings of our lives. We do better with a supportive culture for all persons and capacities, rather than an expectation we’ll sustain that sort of strength forever.
"What stages of life do you see erased from our definition of human?"
I realize that it is overlooked *because* lively physical health is so much the norm for teen and twentysomethings, but illness in the teens or twenties that is neither "psychological" nor "serious" gets overlooked. Youth with an obviously life-threatening disease like cancer, or in something visible like a wheelchair, we get. Youth with mental-health or substance-abuse problems, we get. Youth that are "merely" chronically uncomfortable in a non-psychosomatic way, we don't get. Indeed, chronic discomfort among youth that isn't obviously fixable is likely to be framed as psychosomatic, especially for young women.
The teens and young adulthood are seen as times of emotional drama and testing boundaries. Youth that age complaining of, say, chronic headaches, could be emotionally overwrought or testing the boundaries of how hard they're supposed to work or how "normal" they're expected to act. They *could* be drug-seeking. Or maybe the problem is a drug they've already sought, and they're just chronically hungover.
If you're that age and physically run-down, you might get a lot of "Just wait till you're older!" jokes. And yeah, mechanically, bearing burden X in a body that's otherwise young likely does beat bearing burden X in a body that's otherwise old. Socially, though? People expect you to have that healthy youth, and judge you accordingly, right down to supposing youthful oat-sowing. "Failure to launch" is seen as youthful folly, something to be gotten over. Not as a result of intractable physical limitations. And, to be fair, easily-identified limitations are accommodated with disability law these days. That youth sometimes just sucks for non-obvious reasons not related to your drama or poor choices doesn't really compute.
As a mother of a young lady (18) who has had dysautonomia for two years, I appreciate you pointing this out. Her condition is debilitating and has gradually worsened, and she is so self-conscious about how people look at her when she needs to sit down or go home early.
This is a little different than what you've brought up about age or illness, but having a visible difference (a birthmark that covers about a third of my face) is similarly dismissed as not normal and people like me are routinely dehumanized. Studies suggest that the average human being looks at birthmarks like mine and makes conscious and unconscious judgements about my competency, reliability, and trustworthiness by the sight of my birthmark alone. In similar ways that wrinkles or not participating in "baby Botox", I'm viewed as less than professional with my natural face, no matter my age. Movies and TV shows often use facial differences like mine to indicate moral corruption (Scar, from Lion King, for instance.) Makeup companies will promise me that I will "self-actualize" if I use their foundation to cover up "imperfections." I've been told, also, that I will never be successful in dating unless I hide my birthmark because "no man will want to talk to you unless you hide it first." And my birthmark isn't even that disfiguring, some people barely notice it, but even if it was, there's no excuse to treating people with anomalous facial features as less than human.
My daughter has a facial hemangioma. In her case, it risked growing and interfering with eating or breathing, so we’re treating it to arrest the growth and hopefully shrink it. But it was striking to me how much the specialty clinic where she’s seen and one of the patient advocacy groups put emphasis on how she’d surely encounter psycho-social difficulties if we didn’t treat it.
I'm really sorry about the way people have reacted to your birthmark, Sarah, and to your daughter's condition, Claire. I've run into this kind of reaction (at a much lower level) since I am missing a tooth, and was *heavily* pressured by a dentist to do a taxing oral surgery to get a *prettier* way to fill the gap rather than my totally sufficient bridge. He came out of the office to talk to my mother to try to stop me from "ruining my life." (My life and I are fine).
I'm so glad you commented!! It is, for sure, an underdiscussed stigma. One of the things I've learned: your support, positivity, and acceptance is key to helping your daughter developing good self-esteem. It sounds like you are already very supportive. :)
You and your daughter might appreciate some of the resources at Changing Faces, which is a UK-based charity about advocacy and support for people with visible differences: https://www.changingfaces.org.uk/
I also enjoy the community at Beautifully Blemished on Instagram, which is run by a woman with my same type of birthmark, but works on support and spreading birthmark/skin positivity among all types: https://www.instagram.com/beautifullyblemished365/?hl=en
In addition to those who suffer from physical "un-health" in various ways, this conversation reminds me of what it's like to love and live with someone who is mentally ill. My brother suffered from mental illness and addiction before he died by suicide some years ago, and members of my immediate family persevere every day in this particular kind of internal suffering. The pervasive assumption is that their illness is "not them," (which is both true and untrue, as if there is a kind of Platonic form in which they are Healthy and not Sick, instead of the reality we are dealing with just as it is). These narratives around health-as-standard also serve to emphasize my virtue, making me out to be a rare person willing to *bear* with the clinically-verifiable health-related imperfections of others (rather than the alternative, which I assume is merely permitting my loved ones a handful of idiosyncrasies and ticks before they become burdensome to me?).
This portrait of a healthy person virtuously agreeing to live alongside an unhealthy person takes many forms. I think of the differently-abled couples make a living through instagram posts about "finding love" despite the wheelchair (etc.), for example. The parent who gives up “everything” (usually meaning ambition or lifestyle) to care for their sick child. Those examples are worth celebrating in terms of overcoming difficulties not required of most, to be sure! But I don't know that I've ever seen folks enthusiastically share that they are opting into 'differently-healthy relationships' when it comes to those mental health issues: addiction, depression, anxiety, OCD, schizophrenia, and so on.
Overall I find my humanity and that of my loved ones diminished by these social narratives that presume some pristine model of health as the standard. I am not saintly for loving sick or unhealthy people (no matter the form their sickness takes), and sick people are not *not themselves* by virtue of illness.
You remind me of friends who lost their medically fragile 4yo recently. Everyone kept telling them how heroic they were in their care for him, and their response was always along the lines of, "We are the blessed ones to have known and been loved by him."
My immediate reaction, from a perspective of Christian theology, is about the tension between *what is*, *what should have been*, and *what will be*. It’s true that we will all age and die - but was it supposed to be that way in Eden? And what does it mean for our human relationships to hold the reality of fallen bodies in tension with the promise of resurrection bodies? I don’t have specific answers; this is just what I’m thinking about. Actually, as I’m musing, probably the first place I’d look for answers is how Jesus dignified sufferers in his Incarnation and how he inhabited his own body.
And significantly that he bore His wounds on His glorified body!
I'm actually going to quibble about lively health in one's early twenties! After years of lugging around a very heavy backpack (big huge laptop) and then working part-to-almost-full-time in a coffeeshop (very on-my-feet job) I was struggling with bad knees in my early twenties; one felt arthritic, the other was twingey or painful when I favoured the first too much. But because I was supposed to be Young and Healthy, if I spoke about my aches and pains to someone older than me, they'd brush me off: "oh, you're too young to ache that way." The more I think about our presumptions and expectations of Health, the more I am reminded that, in the words of at least one of my friends who's done work with disability advocacy: the disabled community is the one minority anyone can join at any time.
“What stages of life do you see erased from our definition of human?”
Not so much a stage, but lived circumstances. Incarcerated for heinous crimes—not human anymore. Registered sex offenders—nope! People who suffer drug addiction to the point of living in the streets—not human. If a person’s circumstances invoke a strong sense of disgust, they lose their humanity because they’re not “clean. “ I learned of this from Dr. Jonathan Haidt whose a moral psychologist.
Do you work to hide parts of what it looks like to be a person of your age / your capacities?
I’m pretty fit—for an older woman. I’m pretty proud of that actually. I don’t think I hide anything... but I do like skin care products that help keep my face from looking dull. When I’m dehydrated, it definitely shows up in my face. I look “older” I suppose, but what I see is the need to drink more liquid.
Maybe a little tangential, but the other week I cared for (I'm a hospitalist) a registered sex offender who'd had a catastrophic illness and was now incapacitated, but unable to find care because he was on the registry.
I knew what he had done (at one point I needed to look it up while talking with a nursing home) but also got so, so angry on his behalf. It seemed so obvious to me that despite his crimes (which were indeed truly awful; among the most awful of the awful) he was still a member of the human race and someone should agree to change his diapers rather than cite "liability."
I called legal aid. I called the public defenders' office. I gave his wife my direct line. I argued with nursing homes. I went out of my mind just trying to find him a stupid call bell that he could actually press when the bed needed changing. At one point I had tears in my eyes because I was so infuriated at the dehumanization of this man.
And I also felt guilty for doing those things, hideously so, and dirty - as if my caring for him was a betrayal of his entirely innocent victims.
I felt so awful I took it to confession to talk it over with a priest. He was very helpful for me in terms of understanding why I felt so dirty when I knew intellectually I had done nothing wrong; he said, basically, that our culture dehumanizes sinners and that between that and our own fallen natures we tend to do the same thing ourselves, until Christ forces us to confront that in ourselves. He told me that what I was struggling with was the process of confronting it. He told me that many of the saints struggled with similar feelings (and directed me towards various writings of various people which I have 100% not followed up on yet).
I guess my takeaway and the point of this comment is that his point about "confrontation" really rang true for me. Probably a lot of the disgust and contempt and just plain avoidance shown towards certain circumstances or situations is because looking at it in the Other forces us to confront it in ourselves.
Thank you for your care for this man. It's a serious crime, but that does not make him unworthy of basic care. It's also a big problem when housing restrictions for sex offenders are so tight that some become homeless.
This is such an excellent point. I have siblings who have, at various times of their lives, been incarcerated or tarred as drug uses. They were not necessarily dismissed as nonhuman but as lesser humans by many and sometimes, even by me, something I hated in myself. I was angry I suppose. I am grateful for the closeness we’ve reached now, at this stage of our lives, and for helping me to see that what I saw in them I feared in myself. I have watched them insist on their own humanity in the face of those who would rather simply not see them at all. I have learned a tremendous amount from them that I feel I am calling on now as I age and become less visible.
I kind of have a "thing" about letting my age show. I feel like I've worked hard to get to where I am in terms of life experience/wisdom/etc (I'm 48, I imagine I will feel even more this way over time). I don't cover my gray, I don't wear makeup, etc. I'm proud of the stretchmarks my four babies gave me. In my own little way, it's how I try to represent the okay-ness of looking older than 30.
I can't speak for myself, but I can relate an amusing (and illustrative) anecdote: I was chatting with my best friend's wife on Ash Wednesday via text when she mentioned that she had McDonald's for breakfast and chicken soup for lunch. I was of course missing food, and especially meat, so I joked that she was torturing me with the mention of all these delicious things which I could not consume for fear of breaking the Lenten fast. Her good-naturedly sarcastic response was "Imagine being male with no health problems and never having excuses to not have to fast or abstain." That made me realize that I was treating my situation (a 20-something bachelor with a desk job and no major health problems) as the default and her situation as the weird abnormality. And while some of her specific health issues are uncommon, health issues in general aren't, as I can see from looking at my parents, siblings and friends. By rights I should see my situation as strange, being as it is a product of age, location, upbringing, and genetic luck, all of which are mostly out of my control. But of course, when you look at the media and cultural portrayals, my situation of being young, healthy, and unattached is precisely what's normal. Even the various drug commercials aimed at what might be too-glibly termed "old people problems" show said old people acting like healthy 20-somethings: dancing, eating, drinking, playing sports, traveling, having and enjoying sex. If you think about it a moment, it doesn't really make sense, but there's a very strong cultural push to see what is usually a brief period in most people's lives as the default, the norm, the ideal. I know that I've unwittingly thought and acted that way myself because it's just so pervasive, and I'm not sure where one would start counteracting that at a cultural level, but I can certainly try to be more mindful of it regarding friends, family, and others I might encounter.
As someone who has been nursing for the last three Lents and exempted from fasting, I appreciate this comment!
ah, as if aging were not 'normal'. however, what we are really talking about here are expectations. there is little to no expectation that the mother of a baby or toddler will have white hair. i was challenged several times when i told people who assumed the kids were my grandchildren rather than my kids. 'well, i guess they COULD be your children!' was one of my least favorite challenges. turns out this really hurt my then 7 year old - so i did what my own mother had done when my much younger brother complained about having OLD parents (37 yr old mom and 35 yr old dad), mom with white hair and dad with no hair. i began to dye my hair. the sun had already done its damage to my skin. had i needed to rely on my sole income, there's no doubt i would have been dyeing my hair all along. being perceived as old is anathema for a women in the work force - in my field and in every other one i can think of. not so for many men. i'm not a fan or botox or most other cosmetic fixers because i believe them to be hazardous and to look quite artificial - ugh those lip fillers! but, i refuse to judge anyone who feels the need to maintain a more youthful appearance to remain competitive today. i was always fortunate to not feel that way. now that i have difficulty with tech and pickle jars, oh, how i wish an injection would fix those problems! alas, no such cures avail.
"Phases of life" and "stages of life" are so culturally defined that when we live in a culture, we learn them as "the way things are." But "normal" is the cultural average, not a biological imperative or the same as "normative." Some people over 90 perform athletically better than a some "average" people decades younger. I think it's important to keep a skeptical and flexible outlook when someone says "well this is just what teenagers are like" or "people over 60" or people in their nineties. Etc.
I've studied the books by neuro-anthropologist Mario Martinez, plus his course on Centenarian Consciousness, about how we can recognize and unlearn some cultural imperatives that keep us boxed in. https://www.biocognitiveculture.com/library
I can't imagine anything that could happen to a human being, or anything about a human being, that would make me see them as "less human." I hate it when I hear someone say "oh, my mother/grandmother/sister/spouse has Alzheimer's and they're not really there any more." No way! They just don't fit the ideal picture the speaker has in mind as the way they ought to be. Or "this child was born unable to do X so he just belongs in an institution." I know caregivers who would be quite angry to hear that said. The homeless addict who will do anything for heroin? How very human.
You're obviously correct that humans naturally go grey and get wrinkled as we age, but we're also naturally the only species that has the scientific curiousity to develop botox, or the drive towards beauty to create fashionable clothing that do more than simply keep us warm. Alienation from the organic is just as much a part of our nature as the fact that we are ourselves organic. Some of the earliest preserved bodies we've found had tattoos, every culture has done some form of body modification, etc. We can weigh the tradeoffs (botox is riskier and costlier than I would want to normalize), but why not dye your hair, or whiten your teeth, or etc. Etc. I'm not banging the "makeup is empowering" drum because the expectation that women do certain things is obviously coercive, and unevenly so, but treating "natural" beauty as somehow more morally valid than beauty achieved through technology reminds me of those jokes about taking women swimming on the first date. Science *is* natural, for us as humans. Artifice is in our nature.
I don't know if I would say 'artifice' is in our nature - but *art* definitely. Creating physical manifestations of ideas is a delightful part of what makes us human. Including on/in our bodies!
I think there's a question of the motivation - as you point out, wearing make up or 'baby botox' pursued because of damaging norms and coercion. And a related question about how societally we assign value in the first place (on "beauty" period, natural or not).
I'm very much of the mind that the society we should strive for is wildly accepting of people regardless of appearance or ability - including people who wear flamboyant make up or get neck tattoos.
This makes me always more in favor of noticeable, more extreme makeup, than "no-makeup makeup." The former seems much more like the face as artistic canvas, the other relies on disguising the artifice ("I woke up like this!").
What stages of life do you see erased from our definition of human?
My thoughts: I'm not seeing it, perhaps because I have always been connected to aging elderly relatives. Most of the people I know have had that experience as well.
The only erasure might be their absence from the public sphere as their disabilities make it harder for them to get around. They remain homebound. But they are seen when they go to their doctor's offices.
Among the instances I can think of, one was an absolute necessity. The friend's elderly mother had dementia and was absolutely immobile. Others, their vanity might deter them? If most people knew you when you were middle aged and vibrant, it might be hard to face them when you can't get around like you used to. Or if getting a wheelchair is a hassle, why bother?
Do you work to hide parts of what it looks like to be a person of your age / your capacities?
My own vanities? Coloring my hair is one, I suppose.
When I was watching Downton Abbey, I remember being surprised by how often someone who obviously just wanted to leave the conversation used "I have a headache" as an excuse to step out. I remember thinking, you're allowed to tell people that?! As someone with multiple chronic illnesses, I live in this area where I can more or less function normally, have a professional job, that sort of thing, but my body requires a lot more maintenance and rest than I feel it's acceptable to admit. Twice I quit jobs because I was pregnant and it wasn't the delivery but the first trimester that hit me like a train and I wasn't able to do my work. I'm all for maternity leave but I'm even more for a total revamp of the structures of professional work. People who aren't at peak productivity all the time often have a lot to offer in terms of professional skill and ability and expertise but it's often hard for us to fit into existing structures. Sometimes it's because ordinary, healthy things like pregnancy are just plain hard, and other times it's because of a chronic illness that isn't going to go away. I would be able to do a lot more good for the world with my professional skills if the structures could flex to fit people like me.
I see old age and wisdom as being erased. We seem to have a fixation on youth. Being young is fine, but I appreciate growing older. I am more comfortable in myself and far less anxious. THings going wrong is less worrying as it has happened before. I will admitt that the fine lines and stray grays are uncomfortable, however, I do like faces with character. We should celebrate the wisdom that comes from experience instead of chasing the fickleness of youth.