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Life Outside of the Peak of Health
The work we do to make needs invisible
This week, I have a roundup of your thoughts on what stages of life we leave out of our account of what it means to be human. I also contributed to Simcha Fisher’s inaugural “Read This, Not That” feature, where we all resist the impulse to write hot takes about a bad work and recommend good works instead. Here, the topic is gender and marriage, and my recommendations include Kristin Lavransdatter.
Previously, I asked you about which stages of life we leave out of our definition of human, and what kind of work you do to hide signs of age or other markers of need.
Claire talked about the invisibility of certain needs and people in her neighborhood:
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.
Haley and I both recommended Addison Del Mastro, who writes well on the choices we make about the built environment. I suggested this thread on a thrift store that was nearly blocked for serving “the wrong kind of people.” Haley suggested the post below:
Both Midge and Erin spoke up about how poor health in the young is treated as invisible, since teens and twentysomethings are taken as the paragon of good health and autonomy (including by me in the original post!). Midge wrote:
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 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.
And Erin added:
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.
At the other end of life, I really appreciated this comment from Jordan, which draws on her experience caring for older family members:
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.
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.
We’re very prone to treat dependency as binary—either you can manage on your own or you can’t. But Jordan is right that there’s a big range in between, where you can manage some things, but really need help with other tasks, including ones that sound simple like “Go to the doctor and remember what they said.”
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.
In my own family, I’ve often been the bureaucratic hurdle-helper, while other family members are providing more of the personal care.
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.
What stands out to me is that Christ bears the wounds of His crucifixion on His glorified body. When God fulfills His promise in Revelation that, He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away, the marks our suffering has left will not be erased but, in some way, transfigured.