Life’s infinite richness


Edited to add: Part of this post was reshaped for inclusion in the article Up in the Clouds and Down in the Valley: My Richness and Yours published in Disability Studies Quarterly.

Quite some time ago, a parent, seeing photographs and descriptions of me, decided on my behalf that there was a richness to life that I was missing out on and would always miss out on because I am disabled, specifically autistic, specifically (in this person’s description, not a term I’d use myself) “profoundly” autistic. I wrote a response at the time, but did not have the language to articulate a fundamental difference between his assumptions and my own. Now I, at least partially, do.

Humans have only a limited capacity for perceiving and interacting with the world, and within even the broadest of human capacities, life is infinitely dense, infinitely rich, infinitely beautiful, and there is always infinitely more of it than any one human being can possibly perceive or experience. This is not to say it always looks that way, but this is always there.

That means that any human being can be filled to the absolute saturation point with this richness and there will always be more there, and their experience of this richness is not diminished in the slightest by the fact that there is always so much more of it than they could ever understand.

So, leaving aside for a moment the fact that autistic people appear to directly perceive more of the world than non-autistic people do, how does being autistic change this? How does being disabled in general change this? Even if this somehow meant that we would not have certain particular experiences that particular people associate with “giving life meaning” or “giving life richness,” surely that richness is everywhere, and not just within particular experiences that particular people find joy in.

A full, rich, and rewarding life is not defined by tallying up the experiences valued by particular people in particular cultures in particular places, and is not defined by the cognitive or physical capacities of the person living it. The world has that richness embedded deeply into it, at an infinite level of complexity and simplicity and detail, and it can be found anywhere a person looks.

As someone whose cognitive and physical abilities vary widely from day to day, moment to moment, I know that this richness is just as present when I lack the capacity to differentiate one sensation or moment from another as it is now while I am engaging in complex thought, just as present when I am fully immobilized as it is now while I am rocking back and forth and rapidly typing on my computer, just as present when I have seizures every few seconds as it is now when I am seizure-free, and just as present when I am ‘bedridden’ with pain or fatigue as now when I am active and mobile.

The problem with people’s ideas of quantifying this richness is that they completely leave out the fact that it is infinite in comparison to the broadest of humanity’s finite capacities. A similar problem happens when people try to quantify personhood. In that moment they overlook something vital about the world and people’s experience of it.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

28 responses »

  1. Much of the time, it seems to me lik autistic people are assumed to be missing out on something if we don’t develop *particular* skills that lead to *particular* experiences that other people apparently find value in. It’s as if people are walking around with some sort of checklist in their mind, on which a certain number of items must be perceived in another person in order for that person to be deemed “having a good life”.

    There’s sort of a standard checklist many people seem to employ: the one that lists Having Friends (in a certain way, and of a certain quantity), communicating in particular “normal” ways, monetary employment, etc. However, this checklist is itself extremely limited, to the extent that the person assessing others according to it could perceive these others as having a sadly constrained existence — when in fact, the person-being-assessed may in fact be leading a happier, richer, more complex existence than the checklist-user could imagine. And in addition to that, the person-being-assessed could very well BE changing, improving, and developing in all sorts of ways that are aligned with their own goals, motivations, and interests.

    One of the weird feelings I’ve had that ended up being very hard to put into words was feeling like one of the “professionals” I was seeing had no respect for my own goals and instead saw my own life-plan as a “lack of goals”. Just because this person didn’t perceive my goals as goals didn’t mean I didn’t have any. My goals are intended to lead me toward states of being and experiences and knowledge that match my interests and personality in ways that make sense and that help me function and enjoy being alive.

    There’s also the fact that no matter how much anyone’s capacities are “broadened”, nobody will ever know precisely what it is like to be someone else. It has always seemed terribly silly to me that anyone could argue with an autistic person and insist that somehow the nonautistic person “knows” that the autistic person would be happier and better off if they weren’t autistic. As if somehow (a) the autistic person can’t possibly be having experiences and feeling a “richness” that the nonautistic person can’t perceive, and (b) the autistic person not wanting to become nonautistic somehow means that the autistic person doesn’t want to grow, change, gain skills, etc.

    There’s a difference between wanting to change something in line with your own goals (e.g., practicing a musical instrument “changes” a person in that they end up with knowledge and ability they didn’t have before) and feeling pressured to change something because someone might reject you or discount your personhood if you don’t. The former is a personal choice, the second is evidence of coercion. It sometimes seems like people are trying to tell me that not only am I “missing out”, but that somehow the only way to *stop* missing out on things is to have an entirely different brain. And that’s not true at all.

    This sort of relates to the quantification of personhood you refer to: people are not only judged by how they act, but by what skills they might exhibit at any given moment, and somehow this is determined to be some sort of way to externally determine the quality of someone’s life. It’s a lot easier to deny someone’s personhood, I suppose, when you’ve determined that the stuff they’re good at doesn’t matter and the stuff they’re not good at is All Important.

    Sorry if this sounds rambly or off-topic, but your entry triggered a whole bunch of associations in my brain (it seems relevant to me but I don’t know if it will seem that way to anyone else).

  2. I just had a lengthy conversation with someone the other day who insisted that what little bits I could verbalize of my goals in life were not really true goals, and that I needed some other kind of goals, or else I was just… then the person inserted a stereotype that had nothing to do with me.

    And shortly prior to that, a totally different person had characterized me as “not being all that I could be” and “just happy with how things are”, said in such a way (quite a pejorative way) that made it clear that she had no clue how I run my life either.

    I have no clue how to counter the claims of either one of them because I have no clue how to explain how I do decide on these things, etc.

  3. Wow, I’ve had very similar experiences regarding the “your goals aren’t true goals and you ought to have some other kind of goals” thing. Especially from people who are ostensibly supposed to be helping me with something.

    This is something that is difficult to put into words as well, but when I get a reaction like that (“your goals aren’t real, if you’re not doing X, Y, and Z, you’re not trying) I get this really strange sense of…vastness of information about how I actually DO operate and a realization that the way I operate and plan and stuff cannot really be expressed in words except perhaps in writing over a period of weeks or months.

    But it’s definitely there (my system, that is). And anyone who is around me for a long enough period of time and who doesn’t try to superimpose their own goals and expectations on me will probably see some of it…it being the operation-system I work under. But it’s not something that can be explained to someone in 15 minutes or even an hour, and not the sort of thing that’s amenable to being summarized.

    The other thing is that I do actually have a fair number of “ambitious” long term goals and hard problems I work on frequently because (a) I’m interested in the subject matter surrounding them, and (b) I enjoy the challenge of trying to figure out how things work. And I do devote resources to these goals rather than to certain things I have decided aren’t worth the resource allocation (and which I’ve determined will hinder me more the more I pursue them), and it really annoys me when I get judged for this.

    And again I think I am rambling a bit, but this is also part of what bothers me about “Brave New World”-esque eugenics scenarios: I don’t like the idea of agencies or societies, rather than persons, deciding what pre-existing roles need to be filled and using this as a basis for determining what kinds of people should be allowed to exist.

    I think that society would stagnate horribly if a bunch of people got together and decided, “Okay, in order to keep this society running we need people that fill these particular jobs and have these particular traits, and therefore people who cannot fill those jobs and who don’t have those traits shouldn’t exist because they won’t be able to ‘participate fully’ in the important aspects of society, and of course that will be bad for them as well as everyone else!”

    Not sure how this might relate, exactly, except in the sense that I think that trying to define some people’s personhood out of existence is sort of motivated by an idea that a certain status quo (one in which the majority of people get to be comfortable and not have to bother thinking about people who aren’t like them) must be maintained or worked toward. And this seems to be a really backward way to go about creating a future society. I think that modern society COULD be a lot better, in many ways, but I don’t think that trying to come up with some kind of superlative average existence and set of required capabilities is the way to do it. I think that method is bound to fail, and I only hope that people who recognize the value of diversity and realize the reality of individual experience will be able to get through to the rest of the world.

    (wow, I should probably write my own blog entry at this point…)

  4. Without making a generalisation of it, it seems that at least some people have a dificult time to imagine that people who have a considerable different life as theirselves can be happy or having a fulfilling life at all.

    I’m living alone and I have no desire to get involved in a relationship or marriage and some members of my family have been negative about that. They just cannot understand that I can be happy living on my own.

    Similar, being an atheist, I have heard more than once from people that I cannot have a happy and rich life without a belief in God.

    I don’t expect someone should live a life like mine, so why do expect some people that others live a life that is a copy of their own ?

  5. What I always thought about that is this:

    Make a list. Anyone, make a list. List the things you’ve tried and seen and done in life that you think are necessary to connect to the infinite richness. Experiences without which you life would be empty and colorless and bland. The things where you can only imagine a world without them as colorless and gray.

    Now find somebody else, someone noticeably different from you in at least one way. An activist, an autistic, an ardent traveller, a doctor, a devout churchgoer, a parent, a professional musician, someone single, or sociable, or blind. A few difference is better for this exercise, but make sure there’s at least one.

    Look at their list. Look at all the things you’ve never done, all the qualities you don’t have. Maybe you’ve never been scuba diving, or seen the Mona Lisa, or saved a person’s life. Maybe you don’t know the joy of a religious experience, or the particular intellectual challenge of a college degree. Maybe you’re a neurotypical and have never experienced the reordering of your senses that so many autistics describe.

    Does it suck the value of your life that they have a different list? That you haven’t had the life that someone else would want? It doesn’t, in my view, and there’s no excuse for using your list to insist that life is only worthwhile and enjoyable for neurotypicals, or golfers, or Baptists, because that’s what you want.

  6. Yes. In my next post (which I’m still editing), part of it is going through a bunch of reviews of Oliver Sacks books (which are problematic in a whole ton of ways), and one thing your comment reminded me of was Oliver Sacks and Temple Grandin.

    Oliver Sacks wrote about enjoying sunsets and other things like that, and how this was totally lost on Temple Grandin, in a way that made her life sound drab and meaningless in some fundamental way.

    On the other hand, Temple Grandin writes in one paper about the joy of scientific discovery, and more recently has taken to writing about the idea that life would be drab and meaningless without a job, which ties in at times to her ideas (again expressed more and more as time goes on) about the value (or lack thereof) of so-called low-functioning autistic people. (I do wonder how she’s going to handle retirement.)

    So she has a different list than Sacks does, obviously, but then she goes on to assume in some way that this list should apply for all autistic people, and paints the life of a so-called low-functioning autistic person in pretty much as empty and partial a way as Sacks paints her life.

  7. Ironically, aspies are said to have trouble with the social skill of “realizing that others aren’t as interested in X as you are”. Yet NTs have similar difficulty.

  8. Which goes back to one of the big differences between NTs and ASD, which is expression. NT decide what may or may not be going on in a person’s head based on expression.
    Where an aspie may “ignore” body language showing boredom or mild suggestions to change the subject, an NT will act on it but then categorize the information (person not interested in my topic) as evidence the person is defective/lazy/dumb/disabled/etc.
    NTs seem to demand that emotional and intelllectual expression be uniform. “Smile this way, when this happens”.
    They even do it to themselves. Disagreements may not be considered disagreements of opinion, but “he didn’t listen, he wasn’t paying attention, if he just showed he cared”. They even experience anxiety when they don’t feel up to displaying particular emotions because they know they’ll be judged for it.

  9. I don’t know that that particular anxiety is limited to NTs — I’m sometimes very afraid of how people will react to me when I am able to show no visible-to-them reaction to their presence, for instance. Mostly from experience of their reactions to me.

  10. I read one of the statistics pedaled by a particular therapy that I thought was really off key – by claiming that the overwhelming majority of those with AS are unhappy. I wondered how the figures were determined – were they only surveying people who went INTO therapy because of their issues? If you have no way to contact those who do not want or seek treatment then you can not possibly have an accurate base to make those claims. And that is besides the point that it is still ridiculous to try and interpret anything for anyone else. It herds people into a label and then claims that everyone under that label must have the same wants or needs and desires.

    One of the things that frustrated me when I was in therapy was the condecension over the fact that I was being stereotypically OCD – a blatant handwasher as I say. So not only are you dealing with a person who is disrespecting you – but because of their attitude you are fighting to stop disrespecting yourself. You don’t actually believe the therapist but still haven’t yet come to realize that you are more than your label also. So you can’t even participate on your terms to their therapy because they have determined that you are unable to decide what is the correct way to be. I remember mentioning something that I thought was significant to me and actually having the therapist tell me I should be focusing on other issues before that. So that pretty much determines that you are expected to “ask” what your goals should be and then even when medication was not working I was “told” I was being better. I know you are talking about bigger concepts and perceptions (like society), but even in small areas this kind of thinking can be prevelant. And that is my little therapy rant.

  11. LB – I suppose the majority of AS ppl are unhappy… sometimes. The majority of ‘normal’ people, too.

    I guess I mentioned before that there are things that shouldn’t be decided by majority vote (not literally, in this case)… But one of them is this whole thing of what is a life, or what is a desirable life. I think I maybe used to think like what you mentioned about Temple Grandin, but I am realizing other things now.

    I think that the for people who can work a job without it seriously messing them up, well, we should. And my goal was always to be a useful person so I think that is how I have to do it. But if a person can’t, well, (A) that doesn’t mean they are not useful. And while we’re at it, (B) being useful is not the only valid goal in life, either.

  12. LB, the selection bias you’re describing has also been used by proponents of ‘reparative therapy’ and other techniques designed to turn gay people straight. Using surveys of people who enter their programs, they present these as conclusions about homosexuality and ‘the gay lifestyle’. This gets used to portray gay relationships as emotionally unhealthy and prone to collapse, and gay men and lesbians as coming from unhappy family environments with distorted gender roles and high rates of sexual abuse.

    While simply asking the question “What’s likely to lead someone to want to change their sexual orientation?” suggests that people who have a history of abuse and poor home environments, and difficulty finding healthy stable relationships with the gender they’re attracted to, are more likely than average to want to change their life, and more likely than average to not know what the problem is. Add in a therapy that assumes ‘homosexual desires is always bad, and the main source of problems’, and they can easily draw the distorted conclusion they expected.

    Similarly, if conclusions are drawn about autistics based on the sample likely to seek out therapy or ‘cures’, selection bias will favor those who are unhappy, who aren’t getting the right kinds of support, who don’t have ways to cope, and who are likely to believe that it’s entirely their job to learn how to be more normal, and blame autism when the fail. Throw in a therapist who assumes ‘autistic traits are always bad, and the main source of problems’ and they can easily draw the distorted conclusion they expected.

  13. Amanda, that post should be required reading for anyone who pops off about what life is and should be for autistics. Reading it, and the comments, it occured to me that the real problem is that most people apparently have no inner lives, and so can’t imagine that an inner life can be as rich and satisfying as the externals they consider so important. Even more satisfying, for that matter.

  14. it occured to me that the real problem is that most people apparently have no inner lives

    Is that possible?
    What do they do with their thoughts?
    Do they spend them all on thinking about their ‘outer life’?

  15. N, one of the “advantages” of being “normal” is that you accept the input from your society–friends, authority figures, etc. What’s available to think about is–so to speak–predigested for you. Add to that the number of hours people spend watching tv and taking their opinions and views of the world from what they see there (much of it the same ideas repeated over and over), and you have a population whose inner life, what there is of it, is almost entirely manufactured. And most of that does concern their outer life–how they look, how much money they have, what they own, etc.

  16. a population whose inner life, what there is of it, is almost entirely manufactured. And most of that does concern their outer life–how they look, how much money they have, what they own, etc.

    i assumed my students (mostly NT, i guess) talked about those things so much becos the other inner things they think about are too personal to mention in front of everyone else.

    i find out that this is not the only interpretation, but it was the only one that had occurred to me. go figure, huh.

    [sorry, Amanda this is going way off topic…]

  17. As long as we’re off topic, I think N is closer to correct. I’m one of the NT readers, and most of the discussion of social trivia that I and the people I know engage in is a way of sounding the other person out. It can be a good way to learn about them without putting your inner life up for scrutiny.

    Conversations about things like appearance, popular television shows, hobbies, and where they grew up, can provide a good working estimate of a person’s attitude towards life, without subjecting them to the potentially frigtening experience of asking outright. For instance, “I got it on sale, and it’s great on the muddy hiking trails!” usually comes from someone with a different worldview than “I promised myself no more than five pairs of shoes this month, but it’s too cute!”

    It’s also common to begin the conversation about trivial things, and work to increasingly intimate topics over time. It tends to work fairly well provided people are starting from a similar enough background to correctly interpret the other person’s signals. In dealing with someone from another culture, or someone who has a physical or neurological basis for using different body language, this technique really steers people wrong. So it’s not an ideal approach, but there are good reasons why most NTs act like that.

    As for television, it can be used as a substitute for thought, or it can be a way of preventing overload. I think some autistics stim for similar reasons? Having predictable and non-demanding distraction (which is how telvision is for some people) can help block out the overly demanding outside input, and allow for relaxation. Of course the problem is that the two can overlap, and watching tv as a way to keep your brain from getting overly wrapped up in work can segue into watching tv to not think about what’s bothering you.

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  21. I just happened by, as one often does on the internet, when I stopped to read this whole page. I just wanted to thank you for these posts – for the insight in particular into your experience of the autistic condition and especially also the profound insight of the main post on ‘life’s infinite richness’, which holds great wisdon for all humans on earth. It is a truth often forgotten or disregarded. Even among those, like myself, functioning completely within the non-autistic sphere, judgmental evaluations are constantly being made about one’s own existence versus another’s, someone who supposedly has achieved a “better”, more “worthy” or more desirable life. This judgment is first external and then becomes internal and leads to unhappiness and discontent in society. Thank you again. I shall take that phrase ‘Life’s Infinite Richness’ to bed with me tonight and reconstruct my dreams.

  22. Oh, and I would love to translate this post too!
    It probably says one of the most important thing that has to be said!
    (here too I would put the translation on Asperansa and give a link to the original post.)

  23. Yes, it’s fine to translate this one and the other one you mentioned. You might also be interested in translating “Up in the Clouds and Down in the Valley” (the article linked from here) which would be fine too.

  24. beautifully written and a fantastic we’re phrasing it. I think most people and especially able-bodied people suffer from a lack of imagination. I can’t tell you how many times I’ve heard the “if I ever lost the use my legs, I’d kill myself” and it always boggles my mind. Not just because so many people say it right to my face, but because of the rigidity with which they view their experience of life. As if it can only be experienced in a satisfactory way under certain circumstances.

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