On Advocacy and Semantics
Nick Tarleton commented on my last post, saying:
Conjecture: some people, through some psychological quirk, interpret “opposition to X” as “not wanting any instance of X to exist” - so if you’re opposed to aging, you must want to eliminate all instances of aging in the world, i.e. kill old people.
Conjecture 2: some people conflate judgments about the desirability of traits or states with judgments about the inherent worth of people with those traits/in those states. Evaluating aging as bad is tantamount to evaluating aged people as worth less than the young.
I’ve been thinking about these conjectures since yesterday, and I really do think Nick has hit the proverbial nail on the head here. While the people who oppose longevity medicine obviously vary in terms of their reasons for doing so, I am wondering now if perhaps some of that opposition is rooted in a sense that it is wrong to “medicalize” aging. And as someone who generally prefers the social model of disability to the medical model, I can understand, if not sympathize completely, with this viewpoint.
Here’s why: if I take Nick’s conjectures above and re-word them thusly:
Conjecture: some people, through some psychological quirk, interpret “opposition to X” as “not wanting any instance of X to exist” - so if you’re opposed to autism, you must want to eliminate all instances of autism in the world, i.e. kill autistic people.
Conjecture 2: some people conflate judgments about the desirability of traits or states with judgments about the inherent worth of people with those traits/in those states. Evaluating autism as bad is tantamount to evaluating autistic people as worth less than the nonautistic.
…they start looking eerily familiar. I’ve seen very similar arguments coming from people who insist that yes, of course they value their autistic child (or brother, or sister, or neighbor, etc.) as a person, but that they would “remove the autism” from that person if they could. And that if they’d known of a way to prevent the autistic person from being born autistic, they would have chosen it “in a heartbeat”.
Often, the people who make these arguments have a terrible time seeing how there could possibly be anything offensive about what they are saying. And when autistic self-advocates tell these folks that they find the notion that they ought to be “cured” (for their own good, for the good of society) insulting — let’s just say that the conversations don’t always end with hearts and flowers.
I’ve stayed out of most of the major flamewars I’ve witnessed on the advocacy pages I read, but I’ve certainly read enough of them to get a sense of the common arguments that get made (and how those arguments fit in with my own various philosophical and ethical leanings).
And overall, I’ve gotten the distinct sense that there’s a pretty clear difference between “disability” and “disease”, as well as between “things that kill you” and “things that make you different”. Put in those terms, autism and aging fall into very different categories, since while autistic people might be more vulnerable than nonautistic people in various ways, autism will not kill you. Aging, however, will.
But: on the other hand, there is a framing system in which autism and aging do fall into the same category — and that is the one in which both “states” (aged, autistic) grant a person membership in a group devalued by those in society who hold the majority of the political and effective power.
Autistic and elderly people also share some common fears (”will I be institutionalized?”) and common problems (employment discrimination, etc.). From within this framing system, it seems obvious that reducing the degree to which persons in the disenfranchised groups are treated as pathologies will help improve the lot of such people.
Have you ever been pathologized?
I have, and believe me, it’s no fun. Not helpful, either. There was a professional who tried to insist that I needed to “work harder at being normal”, and who refused to note any of the progress I’d made in learning to communicate more effectively and take care of myself physically at one point.
This was not only disparaging to my efforts, but dangerous — if I’d had less presence of mind, or if I’d let this person intimidate me, I might have ended up returning to prior, unhealthy patterns of forgetting to eat and neglecting important aspects of self-care (because I was channeling too much energy into trying to maintain a facade of “standard” operation).
It was really only when I came to a point of self-acceptance — as in, I started becoming better able to see myself as a healthy autistic-spectrum person as opposed to a “damaged” version of a neurotypical person — that I started really branching out in my activities. I used to spend my weekends wandering in circles in the living room or fretting over the fact that I still couldn’t manage driving a car at my age, but now I spend them writing, researching, editing, and even attending the occasional seminar or conference.
So, on the basis of that experience (and others, when I was growing up, in which certain teachers decided to single me out as a Behavior Problem rather than a kid who was simply developing atypically) I am very, very reluctant to think in “medicalized” terms when it comes to things that don’t directly hurt or kill people.
I think that medicalizing things that shouldn’t be medicalized can make people end up in worse condition than however they started out prior to seeking (or being put into) “treatment”. And I think that treating any person as a “walking disease” and failing to see the person past whatever their challenges might be means you’re running the risk of losing your ability to perceive the person at all.
Which is where the need for semantic clarification comes in.
When some people say “aging“, they mean, “getting older” in the sense of accumulating birthdays.
When put in those terms, I am definitely “pro-aging” because I most certainly think that people should be enabled to experience as many birthdays as possible!
But when others refer to “aging“, they mean, “the underlying bodily processes that lead to stroke, heart disease, immune collapse, dementia, and death”.
When put in those terms, I am “anti-aging”. (And those processes — the nasty ones that kill you — are the ones discussed in Ending Aging, which I highly recommend for anyone who wants to learn more about the science of SENS.)
So basically, I see aging as both a pathology and not a pathology, depending on the context in which it is used and on how it is defined.
I don’t think old people are a pathology — I think that the things that kill old people are pathologies. And I think it would be unfortunate indeed if people coming across longevity advocacy saw the whole thing as an attempt to pathologize the elderly and define them as “gross” and “scary”.
I don’t know if that’s actually the impression people get or not, but if it is, I would like to know so I can work on explaining longevity advocacy better and emphasizing the fact that the goal is to help people survive and maintain their preferred health-state (defined according to individual criteria, not some arbitrary “optimality” measure) for as long as possible.
Now, returning back to the subject of autism for a moment, I want to make it clear that I do not think that autism can be defined (as I think aging can) as simultaneously, or alternately, “a pathology or not a pathology, depending on context”.
Despite the similar social and political challenges faced by elderly and autistic people, and the common experience of lacking power as compared to the young and/or neurotypical (which should certainly be acknowledged), autism does not share with aging the “it’ll kill you if you don’t do something about it” component. And that’s a very important component — one that cannot be trivialized or argued away as a social construct.
You can, after all, be happy, healthy, and autistic.
You cannot be healthy, happy, and dead.
There is no “social model” for death, and I think that anyone who claims to champion the rights of any given group cannot seek to define that group as “obligated to die”!
Longevity advocates, therefore, have a very interesting challenge — one that entails both discouraging age discrimination (especially with regard to health care) and at the same time, promoting the idea that we ought to develop treatments allowing older people to make their bodies function more like younger bodies.
I can see the political thorniness here and I’m frankly not sure what to do about it at the moment, except perhaps to say that I don’t think that older people should be made to feel as if they have to embrace their own age-related death in order to accept themselves as people. To define “not being near death” as the exclusive province of the young seems a rather horrid proposition.
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