The able seem so “motion hungry” sometimes.

I know pretty much every inch of a tree that was outside my window when, due to a combination of mobility impairment, wheelchair-inaccessible apartment, and severe migraines, I spent nearly all my time lying on the exact same couch. I know how it changed with the seasons, I know various subtle differences in how it looked day to day, etc. This is not stuff that people who walked by it on the way from their apartments to work were going to be noticing.

And I always think of that when people claim that they cannot imagine living like I’ve lived, that there are no advantages to living how I have lived, that basically all these things have done is make me miserable and nothing positive at all.

Right–and I think that’s where any kid of advocacy gets powerful–when you start to see the ‘disadvantage’ as something imposed from without, as an injustice that *can* be addressed, rather than an inevitability based a personal characteristic (be it race, class, gender, ethnicity, sexuality, disability, whatever).

This is where these discussions start to get really interesting from a theoretical POV, IMO, because most disadvantages of any kind are to a large extent culturally constructed rather than “inevitable”. But for most of these supposed disadvantages, there are no groups advocating that society adapt so that they are no longer disadvantages. This is because we think many of these disadvantages should be disadvantages. So what tools do we use to distinguish between something that should remain a disadvantage (like, say, being an asshole) and something that should definitely not (race, gender, sexuality, disability, etc.)? There’s a point at which the distinctions become very fine and nuanced.

Brittle, weaker bones. Higher risk of mouth cancer, and weakened cracking teeth..permanently weakened immunity…and a resurgence of other preexisting stuff because the whole body got so smacked around by the chemo, as in sudden, random bouts of intestinal unacceptability, with little time to manage it. Amelioration is sometimes possible, but only sometimes.

But, I’ve got others. Others that fit Blue’s paradigm.

I love sitting still. And I’m better at it than my able counterparts at work.
My body’s had a lot of time to get used to being still. If I’m not chatting up at the water cooler or flying over to my best friends cube to chat, I’m at my desk figuring stuff out. It gives you time to think. Be more self aware. Understand tasks, relationships, beauty, discussions, more completely. Which is why I wouldn’t give up cerebral palsy for nuthin.’ Because I wouldn’t have been able to get through my life up to now without long bouts of sitting still and thinking.

The able seem so “motion hungry” sometimes.

Sailorman: I think the tendency to conflate impairment with illness isn’t as well thought out as you suppose. I think our culture teaches people to mentally react “Oh, look at that poor thing!” to any body that fails to meet standards of normalcy. I suppose a belief that it’s involuntary is built into that since the same reaction does not generally occur when seeing people with blue hair or piercings all over their faces.

I would agree that a lifelong — or decades long — experience with impairment has more to do with who one is than an illness like cancer, though that can be a decades-long experience too. Or it can resolve itself but leave behind impairment. For example, bone cancer that leaves someone with an amputated limb.

Ballastexistenz: You are my latest internet crush. You’re always saying something that fascinates me and keeps me thinking.

I’ve lived my entire life with a kind of pain that is considered among the most severe possible. While, again, I treat it, I can’t say that experience has been wholly negative either.

But I’m uncomfortable with the idea of neatly parcelling out parts of my body as negative and parts of my body as positive. I do accept medical treatment for some things, and not others, but I still don’t view all these things as separated rather than complexly intertwined.

I’m also autistic, and this (in me) appears to be connected to a genetic trait that in my case shapes several aspects of my body beyond my brain. It’s the same gene, doing all kinds of different things, some of which I like, some of which I don’t like, some of which I’m indifferent to, and some of which I both like and don’t like in various ways. How can anyone truthfully reduce all complexity to add up to negative just because it’s not normal?

As for schizophrenia, there are too many different things that can get called that for the term to have any meaning — not all of them involving hallucinations or delusions. Autism was once considered childhood schizophrenia, and was moved out of the category more for historical and political reasons than because autistic people don’t meet the criteria for schizophrenia (we almost always do, except for the “excluding autism” clause). In that sense, I suppose I’m also a “schizophrenic” (was even actually diagnosed with childhood schizophrenia by some medical throwbacks) with no desire for a cure.

(I don’t consider “autism” to be separate from “schizophrenia” or part of “schizophrenia”, because I don’t consider “schizophrenia” to be anything more than the remnants of someone’s miscategorization of a whole lot of totally different kinds of people and experiences, including those of some autistic people. Autistic people may have escaped that category earlier than some, but the category is still such a totally mixed bag as to be meaningless. E. Fuller Torrey is as dangerous as Bernie Rimland in my book, which is to say both have made bits of contributions and then tried to roll human rights back several decades.)

I use a wheelchair most of the time. Both the way my body moves in the wheelchair, and out of it, are valuable to me. I am relatively indifferent to whether I need it or not, though — if I suddenly didn’t need it, I wouldn’t mind, and if I suddenly needed it for everything, I wouldn’t mind.

Basically I see a lot of things as happening in the flow of life and all this splitting up of life into word-world-good and word-world-bad seems meaninglessly abstract to me. Some things just are.

blue, I was thinking more about the “disability like cancer” comment someone wrote above, esp. with reference to the effects of choice on classification. I’m curious if you think this is accurate:

I think the tendency to conflate disability and illness focuses on the involuntariness. And I agree it is a poor analogy.

There are certain conditions in life that are chosen voluntarily by some but abhorred by others who are forced to endure them: abject poverty, pregnancy*, isolation, togetherness, etc.

Then there are conditions that are INvoluntary, but about which most people are reasonably equinimical or happy, because they can’t change them: family status, height, sex, race, disability.

Finally, there are conditions which are INvoluntary, and make the “owners of this condition pretty unhappy, by and large: cancer, disability, etc.

I think folks who equate cancer=disability are focusing on the third group only. Top be honest, I probably would have done so myself a decade ago. And in a limited respect they are correct: you don’t get to choose either of them, and nobody “seeks out” disability. Furthermore, a distinct subset of people who have disabilities are unhappy about it (and I assume most people who have cancer are unhappy about it).

But what that argument MISSES is that disability ALSO shares the ‘involuntary’ and ‘unchangeable’ MIDDLE category with such diverse things as what sex you are, whether you are heterosexual, and where/when you were born. In fact, because disability is more who one is than, say, cancer, and the middle category is more of “who one is”, disability is much more similar to the middle category than the bottom category. That is why cancer=disability is incorrect.

Do you agree with this analysis?

**(way OT, I know, but: This line of thought is the reason that I find the “pregnancy as parasite/disease” argument problematic; some folks seek out pregnancy, but nobody seeks out parasites and disease.)

If someone has been disabled for a long time, or for their whole life, that’s part of their sense of self, of who they are. In fact, it’s just the same with able-bodied people: your physical body, with all its imperfections and disadvantages in society, is part of who you are. Most people don’t want to erase their own histories.

Add to that that most “cures” for disabilities and chronic conditions are far from the magic wand which makes the condition go away as if it had never existed. A person with a cochlear implant is not a person with normal hearing. A person on anti-depressants is not a non-depressed person. Many such cures are painful, debilitating, expensive and so on, and even then don’t work entirely. I know some disabled people who say they would take the magic pill, as Penny mentioned. But they wouldn’t go through actual, realistically available procedures for the sake of possibly achieving a fraction of the ability that society considers normal. And some, as she mentioned, wouldn’t even take the hypothetical pill.

Penny’s comment at 41 made me feel like cheering, thank you so much. It’s not a calculation about whether it’s “worth” using resources to generously award a few accommodations to poor disabled people, because we as a society are so nice and feel sorry for them. It’s about rights.

I’ve occasionally had generalized tonic-clonic seizures while sleeping, which make me sore all over and my tongue, which is seriously bruised and bloodied, all but unusable for days, and painful for weeks.

The God renegades against the Luddites. Politics is always such fun.

You seem to be presenting the biogerontologist view as another “someday there will be a cure” argument.

No, somebody asserted that because all humans currently succumb to senescence, if not some other means of death, that all humans eventually encounter impairment and cannot escape it and that this current fact was of normative significance. I merely wondered if the alteration of this temporal biological reality would change this normative significance.

If such a thing came about, I’m all for individual decisions in whether or not to accept it. Though the persons who chose different paths may come to deride each other. The mortality-choosers may view the humans with indefinite longevity as criminals against nature or renegades against God, and the indefinite lifespan humans may view the mortal ones as suicidal luddites.

I have no illusions about ending ableism, but I think discussing “perfectionist and normative notions of the human body” is not only practical but vital to saving lives that are not valued under normative standards.

You seem to be presenting the biogerontologist view as another “someday there will be a cure” argument. My stance on that as a disability activist is that I don’t need a cure, don’t expect one and wouldn’t want the quest for one to divert from the immediate, practical needs of people today.

I believe I’ve been policing this discussion a bit and it’s not my intention to do that. Carry on, if you like.

The theoretical aspects of a society where people live for centuries is interesting to contemplate but really isn’t relative to a discussion about what people need today in practical terms. A red herring, in other words.

How practical is a discussion about perfectionist and normative notions of the human body which are unlikely to change bigoted conventional widsom? You tread upon philosophical ground, not just funding apportionment stats. Other persons proferred links between the practical matter of impaired persons in society and the theoretical universality of human mortality and vulnerability. If imfunnytoo’s link is valid, then theoretical discussion about the perpetual universality of impairment and senescence is relevant to philosophical discussions about perception of humans and is not a red herring.

the actual methods to make that happen are still complete science fiction

No, the actual methods are in practice already, they just have not been applied in concert. The theoretical aspect involves coordinating the regimen of stem cell injections, immunotherapy filtrations, and telomerase therapies. The actual methods themselves are already fully extant.

Eh. That some scientists think aging isn’t necessarily inevitable doesn’t mean much so long as the actual methods to make that happen are still complete science fiction. The theoretical aspects of a society where people live for centuries is interesting to contemplate but really isn’t relative to a discussion about what people need today in practical terms. A red herring, in other words.