If anyone clicks on my profile, they might notice that I have "disability rights" listed as one of my interests. I think it is necessary to explain my position here. I do consider myself a "transhumanist" because that philosophy is closely in-line with the outlook I've developed independently of even learning of transhumanism -- but I am not in favor of some of the more eugenic-like aspects of some transhumanist lines of thought.
I do not agree with the notion of fiddling with someone's mental / emotional characteristics before they are born. Personality is one of the main factors that determines a person's behavior, and personality is not, by and large, something we are born with. We are born with tendencies toward certain directions, but in many ways, the "self" develops in response to environmental variables.
What I DO support are genetic / in-utero interventions for conditions that actually kill people.
I am opposed to the notion of playing with genes in the hopes of influencing temperament -- the world needs introverts and extroverts, salesmen and inventors, librarians and actors, naturalists and artists. I can understand a parent wanting their child to have maximum chances for success, but I don't think it is right to impose a definition of success on someone who hasn't even been born yet.
Plenty of parents would like their child to someday take over the family business -- but rather than creating some sort of custom-designed offspring who is likely to eagerly follow in the family legacy, I think it is far better for the parent to let their child grow and develop as an individual and then let the child decide what they want to do with him or herself in the long term.
So, how does this relate to disability rights?
The way I see it, human existence is like a huge and complex construct. There are tremendous benefits to having different perspectives as to the nature of this "existence construct". If everyone had exactly the same set of abilities, likes, dislikes, interests, attention patterns, etc., it's likely that many vital aspects of society would cease to function. If everyone were a people-oriented extrovert with a tremendous desire to belong, a lot of scientific developments would cease because everyone would be too busy planning cocktail parties. If there were no Deaf people, we would lose an opportunity to observe how language can develop in a visual (sign language) rather than auditory medium.
To bring this to a personal level, I absolutely am not in favor of manipulating the brains of fetuses if it is determined that the child is going to be autistic. Autism, by and large, results in a developmental trajectory that is extremely difficult to predict. To assume that just because someone has an autistic brain structure that they are going to lead "miserable" lives, "devastate" (how I hate that word!) their families, and "never contribute anything" is ridiculous.
There's no way to know this when a person is conceived or born. Many people with autism are very happy, very successful in their chosen ways, and run into most of our difficulties due to a lack of understanding of our communication style (or due to the existence of social institutions that we would really be better off without). I am certainly in favor of learning how autistic brains are structured, but I think it would be tragic if we sought to eliminate these differences in brain structure.
My own autistic spectrum "disorder" has not turned my existence into a tragic waste. I would be infuriated if anyone decided that I should be forced to undergo some sort of therapy to make my brain "normal". My brain-difference doesn't make it impossible for me to breathe, wonder, think, or live. I fully support technologies that might be able to prevent severe and deadly birth defects (as in, things that result in a child going straight from the womb into the ICU), but I do not support the notion that anyone can decide FOR a person how their brain is going to be configured, what their personality is going to be like, etc.*
One danger in "espousing a philosophy" -- transhumanism or any other -- can come from not differentiating sufficiently between reasonable, ethical goals and unreasonable, unethical goals. In a sense, growing up differently-brained has prepared me to work toward the right to continue existing even when I'm elderly -- I feel that in some ways I've had to justify my existence all along!
In embracing transhumanist ideas, I am not in any way suggesting that everything mankind doesn't alter or influence is somehow bad. I support recycling efforts and nature preserves (as in, plots of land set aside to grow wild and allow nonhuman native life to flourish, not elephant jelly!), and I think that the randomness inherent in human reproduction is essential to our evolution as a species.
I think there are indeed some things we humans should not "mess with" -- but the aging process isn't one of these things. Let the trees grow, save the baby whales, DON'T tell me my brain structure is somehow inferior and in need of elimination from the human gene pool -- but certainly work toward cures for things like diabetes, cystic fibrosis, AIDS, cancer, Alzheimer's, kidney failure, liver disease, and aging that result in actual bodily damage and death.
Supporting disability rights doesn't mean supporting the elimination of everything that might be remotely considered a "disability". Some transhumanists may disagree with me on this, but I say that if something doesn't kill a person or (beyond any shadow of a doubt) drive them to murder or torture, then we ought to look very carefully at how we deal with it.
However, I know that death is bad. I know that dying of age-related illness is no picnic in the park -- some people "go" quickly, due to a freak heart attack or whatnot, but many others just watch themselves deteriorate over a period of years, sometimes many years. The illnesses and infirmity of old age do not represent positive diversity -- rather, they represent an involuntary loss of health concluded with the absolute loss of a person. Someone can live happily and productively using sign language, being autistic, using a wheelchair, etc. -- but it's difficult to be happy and productive in any sense when you are dead, or when your brain tissue is literally destroyed by something like Alzheimer's.
In my support of transhumanist ideals, I support the rights of all people regardless of age, regardless of difference from the "typical" to exist for as long as they would like to exist.
* The only exceptions I make to the "don't mess with people's brains" dictate I follow is in the case of things like sociopathic tendencies, pedophilia, etc. Diversity does not mean we need to accept abusers, rapists, murderers, and child molesters.
6 comments:
Hello Nydra! Just figured I pay a visit and comment on your post.
As I mentioned on BH many months ago, I was diagnosed, in 1968 at the age of four, with autism.
I've always been very skeptical of that diagnosis but perhaps, if my autism was mild enough, my brain somehow healed or changed itself to compensate over the years that followed.
Which takes me to your main point: I agree children and fetuses shouldn't be "edited" to be neurotypical. That deprives the world of some very interesting viewpoints and diminishes our culture in the long run.
Well, one thing about autism is that it makes developmental trajectory very difficult to predict. And development occurs in autistic people and neurotypical people alike -- it's just that autistic people don't tend to "meet milestones" in the same order as a more typical individual. To me, that simply says that the supposed "milestones" are an overgeneralization, and that humans are diverse enough such that the same "checklist" of things one is supposed to learn to do, in a particular order, actually does a disservice to many.
And then we have "modern" additions to this checklist -- things like driving a car, which is supposed to happen when one is around sixteen. I'll be 28 this year and after 10 years of on-and-off practice behind the wheel, I determined that I am not really set up perceptually to drive safely. (I tend to notice things like "a letter on a license plate" before I notice that it's attached to a car, and I have something of a delayed response to visually perceiving movement, especially when different movements are happening all around me). However, I AM percpetually set up to do a whole lot of things that I find useful, and that I do better than a lot of people.
I have an extremely strong visual memory for static patterns (as in, patterns that stand still). I have a great "search function" and can quickly find a particular word on a page. I use my perceptual abilities every day to do things at work (where some of my tasks involve making drawings and engineering diagrams) and also just around the house. And I can hang a picture perfectly straight because I'm very sensitive to linear alignment. :) Basically, the same things that make it dangerous for me to drive confer advantages in other areas, and I wouldn't want to "trade" this. I also like the "challenge" of getting around without using a car: I probably get a lot more exercise than a lot of people through walking, and taking transit has obvious environmental benefits.
My point is that I think that in many cases the autistic brain just "optimizes" differently. One example of this is in terms of speech and reading: I could apparently repeat words as a very small child, but then I lost the ability to speak any word or phrase I hadn't read. This may sound like a "regression", but I think it was actually just a developmental optimization which favored text. When I was just repeating words I had no idea what I was saying, but once I started reading and writing, the notion of words being communication started making a lot more sense.
I definitely think that the entire social fabric depends on having a variety of individuals who are "optimized" differently. Even if we could propose of a far-flung future in which it was possible to be "good at everything", it's likely that individual preference would make some sort of specialization part of everyone's makeup.
I know of several people who were diagnosed as, or showed a lot of signs of, autism as small children but who now either have only "residual" outward signs or consider themselves to be "normal". I honestly don't know what that means, to tell you the truth. What I suspect is that their brains are still somewhat "differently optimized" but that they've adapted to a certain extent, and their development has evened out over time. I also know some people who plateaued at a certain age, and others who lost skills (usually getting better in other, "nonstandard" skills) at different phases in their life. In my case, I know I feel perfectly "normal" at home doing things my own way, but that I'm quickly reminded of differences at work, etc. -- like when someone comes up and tries to engage me in chitchat and I have no idea what to say, or when I find myself flapping my hands while walking through a parking lot (it helps me feel "oriented in space"). But I certainly don't feel sick or damaged or depressed -- I'm happier than most people I know!
Hm. I find noteworthy coincidences between some of your experiences and mine.
After trying repeatedly in my twenties, I too gave up on driving. What I'd often find is that I'd "lock up" when confronted with a sudden change or emergency.
My brain would go into a sort of useless overdrive where it would desperately try to figure out how to deal with something like a sudden break failure. I say useless because, in the meantime, the car is hurtling towards disaster.
This was so bad that, one day, I drove my friend's truck straight into a tombstone, snapping the stone right off its base. I never touched the wheel again.
I could probably drive but only if it was all in slow motion, like a chess game, where I'd have plenty of time to figure out how to deal with changes and emergencies.
I also find myself gesturing meaninglessly while walking. It's sort of embarrassingly like I'm dancing or something. It seems to please my brain to guide my body with some limb acting as a leading edge. It's hard to describe. My head goes into this groove and suddenly I'm exaggerating all my bodily motions as if I'm tiptoeing. Going around corners, bypassing obstacles or turning seems to provoke this in me. I find my hand pointing and then dragging my whole body around a corner.
There are other quirks I have that still persist to this day--stuttering, talking aloud to myself at great length, utter failure to multitask, fugue states, repetitive behaviors, etc.
But I agree with your idea of everyone having different developmental paths. The brain seems a lot more adaptive than we often give it credit.
It's also clear that autism is a continuum. At one end we have high-functioning people with only mildly autistic traits and at the other we have people with striking savant abilities yet profound lacks in other areas.
The question then becomes, is it possible for even a profoundly autistic person to slowly train themselves into more neurotypical behavior? (I'm not saying autistics should do this. I'm just exploring the question in the abstract because it poses intriguing questions about brain development.)
Or are there some forms of brain damage that are so deep that experience and brain development can't route around the damage unless helped by outside repairs or medicine?
My brain would go into a sort of useless overdrive where it would desperately try to figure out how to deal with something like a sudden break failure. I say useless because, in the meantime, the car is hurtling towards disaster.
Indeed, this is exactly what I experience -- I basically don't react in a sensible manner to sudden stimuli. I need lots of time to sort out sensory input and figure out what is most relevant, and being a safe driver necessitates being able to make good split-second decisions and make sense of input in the "right" order. The order and manner in which I perceive my environment is very good and well-optimized for things like pattern recognition and mechanical drawing, but it is very poorly optimized for driving. Hence, I consider it to be much more responsible of me to NOT drive. I honestly don't feel like I'm missing out on anything, and I have a hard time understanding the common American mentality that deems anyone who gets past age 18 or so without a license as some sort of freak. It doesn't bother me not to drive. It bothers me a lot more TO drive, since I never feel safe.
I could probably drive but only if it was all in slow motion, like a chess game, where I'd have plenty of time to figure out how to deal with changes and emergencies.
Same here. Processing time is essential.
It seems to please my brain to guide my body with some limb acting as a leading edge.
I totally understand what you mean...I use this as sort of a vector to get through areas that are somewhat too crowded for easy navigation.
There are other quirks I have that still persist to this day--stuttering, talking aloud to myself at great length, utter failure to multitask, fugue states, repetitive behaviors, etc.
Multitasking is probably THE most difficult thing of all for me -- and it is doubly annoying because I've often heard silly comments to the effect of, "We need more women in the workplace because they can multitask better!" Um, if anyone attempted to make this generalization about me they'd be sorely disappointed. My performance goes rapidly downhill the more things I'm expected to keep track of simultaneously. However, I CAN work on the same thing for very, very long periods of time without experiencing boredom, and I have had people compliment my thoroughness and attention to detail. Basically, I need to keep assimilating details about something until I can build a "mental model" of it in my head. I tend to think of different areas of subject matter as being stored on "cartridges" and in order to have access to the thought-space describing a particular topic in depth (and with any coherence) I have to "load the right cartridge".
As a youngster, I did echo speech, reverse pronouns, fixate on subjects and parts of objects, etc. Nobody knew what I was going to grow up to be like, but I have a feeling I managed to unwittingly surprise everyone. When I was four, it was doubted that I'd be able to attend regular school without "lots of support and special services" but I did get by. I really don't think anyone can tell what someone is going to be like as an adult, or even a twelve-year-old, when they're four.
I used to make the "high functioning / low functioning" distinction, but now I'm really not so sure that such a distinction can be truly said to be valid at all. I've read about autistic people who were considered to be "profoundly retarded" until they started writing or typing -- at which point they were re-designated as "gifted" because they finally had an interface with the world. I think that "functioning level" is quite arbitrary and environment-dependent: I may be "high functioning" in my living room, but take me into a crowded bar or party, and I'm probably quite indistinguishable from people designated as "low functioning".
If this sounds a bit strange, I'd recommend visiting: http://www.gettingthetruthout.org
(Read the WHOLE thing -- the first 10 pages or so might be a bit misleading, but there's a point to it)
I would also not refer to the autistic brain as "damaged". As far as I know, the brains of autistic people have been revealed to show some structural differences, but nothing like lesions or "dead" areas or things that would actually indicate organic trauma or injury or illness. I think that autism is just another way to develop, and the degree to which structures differ from those in the more "typical" brain can vary, but it's not the same as an injury or damage. I know that the brain emphasizes and "prunes" connections throughout development; it's a continuous process of optimization. Certainly, 2 people can accomplish the same task through entirely different mental means -- this is the form "adaptation" can take, I suppose. Some people learn to read through "phonics" and explicit teaching, whereas others teach themselves to read and end up memorizing the visual shapes of entire words. In the end, it's difficult (and possibly unwise) to try to determine who is the "better" reader -- the important part is that both people are reading.
Nydra, I originally came to your blog to read your impressions of the conference at Stanford last week, but I've ended up spending the wee hours reading your entire site. So many of your perceptions are aligned with mine and you've expressed them vividly. This has been a most enjoyable experience.
Arriving at this "brilliantly lit" comment box after spending time in the comfortably dark blog environment is disorienting. Discombobulation aside, I want to respond to many of your specific comments, but it's after 4 a.m. here and I need to get some sleep, so I'll have to return later.
Anonymous:
I agree with you about the brightness of the comment box...I wish there was some way to control that. I purposely chose comfortably low-contrast coloring for my main blog. :)
Also, thank you for stopping by...I am still amazed that anyone cares what I write, but attending the conference and reporting on it has been a tremendously rewarding experience (as has simply coming to realize that I am not the only person in the world with certain notions about life!)
I'm especially encouraged that you've commented on this entry...one thing I'm attempting to emphasize through my involvement in transhumanist / progressive circles is the necessity of diversity, and the capacity of a society to accomodate an incredible range of morphological variations and ability sets. Take care, and certainly feel free to comment on anything!
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