In January, while being pulled along by my impatient terrier, I slid down an icy slope and crossed a border. At first, I denied I was in new territory; it was just about being more careful, staying on flat ground, letting the dog off leash to run herself in the park, leaning into using shopping carts to walk the grocery. At last an MRI showed what I had been willfully ignoring—my arthritis was burning hot, no cartilage left, my hip bone literally cracked in the flame. Then my hand began to curl up from nodes, like my father’s. Then it seemed every other doctor had a proposal for surgery for me or my husband to consider. We are getting older.
A long medical journey later and I have a new hip, a stitched-up hand, and an appreciation of the Land of Pain, a place I am gradually exiting but likely to revisit one day. I am not the first to experience this as a place;[1] it felt as though I had left my home and went to a strange new country where some of my friends and relatives with chronic conditions have been living.
Here, to our shame, we need a lot of help with even childish tasks, like putting on socks. There are spells where our bodies hijack or drain our brains, and so we carefully ration our social time due to exhaustion from coping. What must be coped with is the pain itself, the loss of joys and possibilities that may have been integral to selfhood, and often, the end of a stable or optimistic sense of one’s future. That’s a lot, but there’s more to bear--the expectations of other people.
Walking a street, much of my consciousness was focused not on conversation but on making my legs and knees work without producing sharp hurt or sudden jerks. I’d have to explain to my long-legged family that I really couldn’t scramble after them now. There’s the awkward solicitude the cane or the sling produce—can I do that for you? (no, I look helpless but can still do all sorts of things). Then there are the skeptical, the oblivious or the hostile to contend with. Sometimes the cane is handy for gesticulating to people rushing headlong at me, absorbed by phones or hell-bent behind prams. Worse luck if your disability is not made visible by a big stick.
People tend to avoid or overlook the disabled and the old. This seems startling and difficult for men particularly; I remember Donald Hall’s wry description of how a wheelchair erased him as a person in Essays After Eighty. As a short woman, I’ve had lots of practice being situationally invisible--in conference rooms, hailing taxis, ordering at deli counters--and grew into my mother’s loud voice to compensate, which makes my kids cringe the way I once did. Medical researchers at Yale apparently just learned that frailty is linked to depression. Hardly news to anyone but a doctor.
When I taught human rights, I left disability to the last class of the semester. Few would volunteer to lead discussion; it was the least sexy topic for college students, even though I guaranteed its relevance to virtually everyone who didn’t die young. It’s quite different regarding these issues from a distance than ‘living their reality,’ as they say these days.
Age, especially when coupled with illness or disability, makes you afraid. It’s coming for you. People who are afraid often project their anxiety back in metaphors and narratives about the affliction and the afflicted, as Susan Sontag observed. Why them and not me? Failed to wear a mask, didn’t exercise, ate the wrong stuff, slept around, always was neurotic, wrong genes, only the good die young…. We often mistake people for their condition. Stiff legs don’t mean a stiff mind or calcified person. Those who look elderly and pained are scary, even to themselves, and the onus is on them to soothe and reassure, as the wellness industry well knows.
That may be why there’s an international human treaty on the rights of the child (1989), and another on the rights of persons with disabilities (2006), but none on the rights of older persons, despite international gatherings on the topic for more than forty years.[2] Many have questioned whether such a treaty is really necessary—the elderly are covered by other generic rights guarantees, so why do we need more specific law? The elephant hiding behind this question is a feeling that the ways we treat the aged differently is somehow rational, or even essential in certain circumstances.
Agism worldwide finds its rationale as a “survivalist” discrimination, a reluctance to allocate scarce social resources to those more likely to soon weaken or die. This manifests in innumerable awful ways—from malnutrition of the elderly due to poverty, traditional practices or neglect in institutions,[3] to tolerance of age discrimination in the workplace,[4] to lack of social security and healthcare safety nets for the retired,[5] to abuses and attacks on the elderly left behind in war zones,[6] to the practice of medicating the old into a stupor to save on nursing care.[7] Vulnerability to being hit by a pram is the least of it.
At last, there is new momentum towards filling this legal gap. This May, a UN Open-ended Working Group on Ageing, established to look into the question of an international treaty, recommended one be created, which means it is likely that the UN Human Rights Committee will take up the issue as well. There is still no world consensus on such a law, but with the percentage of the global population over 65 growing rapidly, finding a way to make longevity as healthy and productive as possible is now a hot market niche. My social media feed is overwhelmed with cures for wrinkles and gorgeous, toned, gray-haired ladies doing yoga stretches. Capitalism notwithstanding, we all want to live long and prosper--but the reality is we will not all age well, and we shouldn’t be legally or socially penalized for it.
Laws, of course, are not enough to reverse discriminatory attitudes, even when they signal those attitudes are wrong. It will be a long march to get recognition that being old is not a “problem” and you aren’t at fault should you find yourself enfeebled or unwell. Fortunately, the disability community has blazed the way in shifting the conversation from pity and ‘solutions’ to inclusion and accommodations by right. No doubt I’ll be on that march, and I hope even a few of my young friends might come along.