Editing.

Standard

Mom26children has written a post about the assumptions people make about her family based on their television appearance. I can identify a lot with what she writes. When CNN came to my apartment, they took two days of footage for that one ten-minute segment. As Mom26children says:

Some of you guys question the severity of my children’s autism by what you saw on an hour show. With commercials, you had 45 minutes into my very “edited” life.

I’ve been asked privately to clarify a lot of things about the CNN show, but I haven’t had the time or ability to think back on it much without the chaos of the whole thing being rather overpowering. But I think I’m finally at a point where it’s distant enough I can say this stuff without my head getting tangled in a lot of overloading memories.

That’s one thing right there: The whole experience was me under overload. It does not show how animated I usually am, and even the parts of the show where I did show more animation didn’t make it into the final product. I am remembering in particular when Laura brought baklava over, and they were excited to get footage of me squealing and flapping and smiling. But that didn’t make it into the final video.

They didn’t show me running away from the camera for most of the first morning until I got used to them.

Some funny things didn’t make it into the video, too. I still want to know what CNN does with some of their funnier footage. At the dog park, they trained the camera on my dog. Right as my dog peed. And right as another dog came up behind her and drank the pee. Which had all of us cracking up, but we knew they wouldn’t use that. I guess it’s sitting in an office somewhere if they don’t throw it out. They ought to do outtakes of their news shows.

They showed us at the dog park, but they did not show me after I took my jacket off and had a wide patch of my back exposed, and my staff was chasing me around trying to pull my shirt down while I didn’t get what the big deal was. They also didn’t show Laura explaining to me later that not being able to feel the cold doesn’t mean I won’t get frostbite.

They did not show even a little bit of the interview with my case manager. They interviewed him about his experiences with me and with autistic people in general. He also showed them all the equipment in my apartment that assures that I can get support at night without needing a roommate. (I am thinking of making a short video on that because it’s a really important idea that not a lot of people have heard of.)

There was also a lot of time they spent interviewing me that they of course didn’t have time to show. When they did show it, they did not show the reporter that interviewed me, they just showed Dr. Gupta. The reporter and the cameraman and sound woman actually spent the most time with me, Dr. Gupta was only there for a couple hours to interview me on the second day.

They showed the dentist’s appointment, but not really anything that happened within it, maybe due to confidentiality or something. What happened was the dentist basically assured me there was nothing mechanically wrong with my jaw to cause any pain. (When I saw the jaw specialist a couple weeks later, he did imaging and found that in fact my jawbone is underdeveloped in general, and the rounded area that the jawbone is supposed to rest in, is supposed to be deep and round, but mine is shallow and flat, and that I clearly have mechanical trouble closing my mouth and keeping it closed, as well as dislocation and pain and all that fun stuff, for reasons related to that. The dentist I saw on the show is no longer my dentist for that and various similar reasons, as well as my learning through word of mouth that his practice has a bad track record with autistic patients.)

There was also a lot of misinterpretation.

I suppose it makes better drama to say that I banged my head because I was an intelligent woman who felt “trapped” somehow. But really it was just because I made a typo and I was already stressed out. It was the first time I had banged my head in months, but they played that clip over and over.

I actually told them in great detail why I used a wheelchair, which has to do with a combination of assorted physical problems and a parkinson-like movement disorder I have. I told them how I waited until I was otherwise basically stuck in my house before deciding to get one, and how much more exercise and exposure to the outside world I got now that I had the chair. I told them about previously going out in groups at agencies and holding up the group when I’d freeze, and how another client used to comment they needed to get a giant spatula to pick me up. And so forth. Then I later told them that when I was lying down on my friend’s couch it was easier for me to think to answer questions, and that I’d have preferred to do the interview lying down for that reason. Somehow my reason for lying down for the interview got translated into “why I use the wheelchair” and they broadcast that information instead of all the previous information I told them. They said that I used it to make it easier to think, and while it is easier to think while not concentrating on walking, it’s not my primary reason for using the chair.

I think they were among the many people who greatly simplified the history I actually gave them of my life. That makes sense given the amount of time they had. But I told them a lot of complex stuff about my speech history that got simplified into something much more abrupt and sudden (which is what most people do to it, complexity doesn’t make for good sound bites). We discussed thoroughly why I was considered additionally to be psychotic for a long time, and they discussed that with my case manager as well I’m told. I explained all about elves and hiding in stereotypes and psychiatric force and everything else. I suppose that was too complex too.

I told them that I did not live in my own world, I told them this emphatically. While this did make it into the second segment, the lead-in to the first segment was still somehow about how I was trapped in a world of my own. (The people I talked to at CNN were not the editors, and did not even themselves have editorial control over the content of the shows.) I told them how I disagreed with the mild/severe and HFA/LFA dichotomies and stuff but everyone by now knows what they said about that.

I told them how the video I made was not actually about autism, it was a response to the situation of Ashley X and anyone else where people assume a lack of standard communication means a lack of standard comprehension and that a lack of standard comprehension means a lack of humanity and lack of value and lack of personhood and lack of basic human rights. Like many people, they still portrayed the video as being about my wanting to take people into “my world of autism”.

They of course also did not show me after their team left on the second day, while I was lying on my friend’s couch uncontrollably ticcing and screaming, something my body reserved until I was in private and familiar enough surroundings to do that sort of thing.

They didn’t show when communication broke down, they didn’t show how I struggled to find words a lot of the time, they edited out most of my typing, they edited out a lot of the parts where I said things I didn’t quite mean to say or didn’t understand what I was saying, they edited out the times when my friend had to interpret for me.

They didn’t show a whole lot of my staff, despite my staff being there most of the time, and despite my staff actually having spoken on camera on a number of occasions, as well as spoken to them directly about me, they didn’t use any of that.

So basically, they did not show some of the things I was capable of, they did not show some of the things I had difficulty with, and they simplified a lot of aspects of my life to fit into a ten-minute segment. This is standard for the sort of thing that the media does. I actually found it quite a lot better than I expected despite these problems.

When you see someone on television, you can’t know all about them. It’s not a standard situation. There’s editing. There’s nervousness around the cameras and the intrusions. There’s the fact that you’re only getting a tiny slice of a much broader life. You can’t know what that person is like when the cameras are gone, you can’t know how they move and behave every second of every day, you can’t know their abilities, you can’t know their difficulties, you just get a tiny snapshot of their life framed in whatever way these virtual strangers want to frame it. The person themselves has no control over the editing, nor often do the reporters. Anyone who thinks they can tell all these things about a person based on a news story doesn’t really know how these things work.

And that goes for my own videos too by the way. Seeing me for a few minutes doing things specifically intended for broadcast on the Internet doesn’t equal seeing me all the time either. They are of course more accurate than something made by a stranger will be, but they’re also only tiny slices of my life. Even my blog is only a tiny slice of my life, you don’t see how I live every day. Larry Arnold as well has written about that one.

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.

34 responses »

  1. Oh yeah. Happens all the time. People in the RKBA (Right to Keep and Bear Arms) community are very aware, and wary, of this kind of thing, having been hurt by it many times.

  2. It’s fairly evident that a high proption of programme makers, in the reality tv and documentary genres, use selective editing to fit in with whatever message they are trying to convey. I am probably one of the few people who reads your blog who has not seen any more than a few clips of it but I know that if it’s only on for a short while it will be impossible to convey the full story of who you are and what your life is like.

  3. Cyndi, have you read the section titled Official Papers and Stuff? It provides fairly thorough documentation of Amanda’s autism. If not, go back, read it again, and ask yourself how much of what you see at work is influenced by you or your co-workers assuming that someone who flaps their hands or wears diapers can’t be intelligent, as opposed to how intelligent the various people who flap hands, wear diapers, or have whatever obviously autistic trait you care to name actually are. If you have read that section, what, if anything would be sufficient evidence of to contradict your impression of what autistic people are “really” like?

    As for Susan Senator’s blog, there seems to be a lot of miscommunication there on all ends. For instance, a lot of people seem to translate “This practice, which you engaged in once that I specifically know of, is bad for these reasons, and I’d like to explain this to you” into “You’re a bad parent and a bad person for ever having that thought cross your mind, and I’m only here to tell you how much I hate you!” I don’t know why so many people make that leap (I’m a non-autistic fan of this blog, and the people making that strange mistranslation aren’t autistic either, so it isn’t that.) And a lot of readers from this blog are trying to repeatedly explain the substance of a message which the other commenters don’t seem to understand or react to. So stuff gets repeated a lot, and drives the post count up.

    I also suggest reading the post “Just look at them and you’ll understand” to get a good idea of how well the “I work with Autistics, and I know what those people are really like!” approach is likely to play, and why many people here have good reason not to consider that a particularly authoritative source of information. In fact, read every post tagged with the word “Staff” to get some ideas about the staff point of view, and how it can be distorted by power and circumstances.

  4. Cyndi, you need to broaden your mind. Seriously. Go to the Autism National Committee conference. I will be there, so will be a lot of very intelligent people who look a hell of a lot more non-standard than I do. It might be that you are underestimating those that you work for.

    Also go over to my friend Joel Smith’s website. He flaps too, and needs diapers, and has a high-tech computer industry job making reasonably good money, and can only talk some of the time, types the rest of the time. He was diagnosed with autism and mental retardation at the age of four, and he and I are very similar to the point of being able to read each other’s body language in ways that very few other people can.

    You might also want to meet Kathy Grant, who is very obviously autistic, flaps, etc., also speaks fluently (and by many people’s standards almost to excess) and highly intelligent and very friendly.

    Heck, a lot of autistic people who can otherwise pass for totally normal, flap. I’m surprised if you work with autistic people you haven’t seen that. (Or maybe you just don’t know enough people old enough to pass well.) Even Uta Frith acknowledges that one.

    Whoever works along with me is an agency called Howard Community Services who provide assistance with a lot of things. You can contact my case manager Jim Hessler if you want to verify my existence though. You can even visit, that’s a standing offer to people who don’t think I’m a real person.

    They, however, have nothing to do with my disagreeing with Susan Senator’s stance on one particular issue. Nor in fact does my status as an autistic person have to do with my stance on that particular issue, a stance that is shared by many people, autistic and non-autistic alike (and also disagreed with by many people, autistic and non-autistic alike).

    CNN did their homework by the way. They have seen more of my medical records than I have online (and I have a ton of my records online, more than I should have to), and they have verified them with the doctors who produced them. They have contacted the doctor who diagnosed me originally at the age of 14, after being randomly assigned to me in a psych ward, a doctor who (with one brief hiatus due to insurance reasons) remained my psychiatrist until his recent retirement. They have seen abnormal brain scans done by a fairly famous doctor when I was a teenager.

    My case manager and many others have seen records that go back even before then and describe my lack of friends and flat facial expressions and stimming and so forth as well as my increasing difficulty with speech and movement over time with writing possible some of the time when speech was not there. And they’ve seen all the weird stuff I wrote due to a lot of things going on that are too complex to explain briefly. They’ve seen the unanimous agreement of every doctor who ever examined me (even those who went the “psychotic” route rather than the “autistic” one) that whatever else was going on I had always had a developmental disability. And they’ve been in contact with my family to verify this stuff as well. Not to mention the records from a neuropsychologist assigned to me at the age of 13 who verified the autism diagnosis and also believed I had “strong dissociative tendencies” (which I think was his way of encapsulating the fantasy world I used to use to escape from some pretty unpleasant parts of reality, but no longer do at this point). And the standardized test results in which I had a peculiarly autistic pattern of strengths and weaknesses.

    I’m going to give you the benefit of the doubt and assume you didn’t know all that, and thought that CNN just randomly lets anyone on the air who happens to look autistic. I know that some people have acted like Mom26children’s family wasn’t really autistic either, and Mom26children pointed out the amount of factchecking that goes on. And there is a lot of factchecking that goes on. If they hadn’t seen plenty of evidence, more than you have certainly, they would not have aired the story. MIT, also, doesn’t randomly let people collaborate with them without checking them out first.

    None of which has a thing to do with the fact that I disagree with Susan Senator on one particular point, of course. But if you thought autistic people couldn’t both look autistic and be intelligent (and disagree with some people who happen to be parents, from time to time), you have another think coming.

    By the way, the diapers have to do with the fact that I can’t always feel the need to go to the bathroom, and even when I can, I can’t always get to the bathroom on time due to a movement disorder that started getting more prominent around the age of twelve. This is really common in autistic people, our toileting skills have nothing to do with our intelligence.

    I’ve given you the benefit of the doubt here and assumed you are just ignorant and not malicious. I’ve given you more information about myself than most autistic people on the net will give you, and more than anyone should have to give random people who run around claiming we’re not autistic because if you can do X you can do Y and if you can’t do Z you can’t do A either and that kind of crap that is known not to apply to us. Be aware that malicious ad hominems (“you are not autistic” as a way of shutting up autistic people who dare to actually disagree with a parent from time to time) will not be tolerated on this blog, and beyond this I’m not going to go into proving that I’m autistic, I’ve done so for enough people with more credibility and need to know than a random stranger, it should be enough for you as well.

  5. Well Cyndi before you go equating flapping with a lack of intelligence may I remind you of Magnus Pyke, a scientific celeb from days gone by who was renowned for his manual exuberance http://en.wikipedia.org/wiki/Magnus_Pyke
    and if diaper wearing equates to a lack of intelligence then I only have to cite my own mother as a refutation of that.

    It is interesting to note that she was once interviewed for a post on a local hospital board. When the interviewers saw how disabled she was they were somewhat surprised as one of them stated, that they had not expected from her CV that a person as disabled as her would have been able to achieve all those things.

  6. Imagine telling Stephen Hawking, “hey, I don’t think you’re the physicist who wrote A Brief History of Time. The brilliant writing in that book just doesn’t reflect the severe neurological disability that is ALS…” and so forth.

    BTW, I’m very uncomfortable with the “more severe, less severe” stuff. I feel like I need to prove myself. I hate to be called “mild” anything.

  7. God help the autistic people you work for Cyndi if your impressions on whether someone is autistic, or whether they are capable of doing one thing means they are capable of doing other things. Or if they can’t do something that must mean they can’t do other things. Since when did a person’s ability to type mean they didn’t have to wear continence aids? Has it not occurred to you that there may be physical reasons as well as mental reasons why a person might have to have continence aids?
    To be brutally frank I am sick and tired of people taking one aspect of a person’s life, one tiny facet of them and presuming they then know everything about that person.

  8. Cyndi:

    Some more posts you might want to read:

    This one in particular might be of interest: http://ballastexistenz.autistics.org/?p=330

    And a video to check out (an interview with another autism woman on why she thinks the dividing line between “high functioning” and “low functionioning” may be more artificial than the “experts” think): http://ballastexistenz.autistics.org/?p=240

    And these may also be interesting:

    http://ballastexistenz.autistics.org/?p=380
    http://ballastexistenz.autistics.org/?p=379
    http://ballastexistenz.autistics.org/?p=355
    http://ballastexistenz.autistics.org/?p=348
    http://ballastexistenz.autistics.org/?p=346

  9. One thing I was thinking about recently, that I think relates here, is the way TV shows in general are created. I was watching some of the “making of” features on the “Buffy the Vampire Slayer” DVDs, and it was pretty amazing how they managed to use camera angles, props, and lighting to turn a parking lot into a graveyard, a playground, and various other locations. What looked like stone and granite was actually Styrofoam, and what looked like a heavy wood-and-metal pipe organ was actually made of cardboard. And yet, after editing and adding music and sound effects and carefully crafting each sequence of shots, you had a scenario that looked exactly like it was supposed to look. Not like what it actually *was*, but what the people behind the cameras wanted the viewers to see it as.

    Of course, fictional shows are categorically different from nonfiction, and news programmes are at least ostensibly supposed to be committed to showing the truth. But nonfiction on television has tremendous difficulty relaying the reality of anyone’s life, simply due to the fact that it must work within some of the same parameters as fictional shows. Time constraints are a definite issue. Having to deal with the people being portrayed as *people* rather than “characters” is another. It is a lot easier to show a character, or someone that is supposed to “stand for” or represent something, than it is to show a person. This is one reason that “reality TV” is not reality at all; the camera affects people’s behavior, and the shows themselves are marketed and edited to be sensationalistic. They manipulate the “actors” and the viewers alike.

    All that said, I don’t think it’s bad to make nonfiction shows about actual people. I think that some of them can be very educational. But I think that the viewer of the show must accept the responsibility of acknowledging that what they are seeing cannot possibly tell them all there is to know about the person being portrayed. This doesn’t mean that people can’t tell *anything* about a person from seeing them on TV or reading their blog or meeting them once — but rather, that people ought to avoid filling in the blanks in what limited data they have with preconceptions and then being mad or accusatory when those preconceptions turn out to be false.

    Incidentally, here’s a video of me playing with my camera tripod:

    This video represents 16 seconds of my life but I’d bet that some people would still probably find things in it to hold up as “evidence” of something pertaining to my neurology.

    And to Cyndi: I second the suggestions to try getting acquainted with other autistic people. If you “work with” autistics you’ve more than likely been fed a lot of clinical language and assumptions about autism and autistic people. This isn’t necessarily your “fault” (none of this is about fault), but it is definitely something you should keep in mind if your goal is truly to help and understand people whose neurologies differ from yours. Autistics are a lot less homogeneous than most people seem to think. And the things we have in common with each other can’t generally be based on concepts like “functioning level”. Amanda and I have a lot of similarities in our cognitive and information-processing styles, but we (probably) appear quite different on the surface, to the point where most people would probably have difficulty guessing how much we actually have in common. And those surface factors have a lot less to do with “autism” and “severity” than they do with individual life experiences and other randomizing variables. If you take the time to learn about/get to know a wider variety of autistic individuals, you will probably find that this scenario is more common than uncommon.

  10. I would think that the possibility that someone “might” be like Amanda would help Cyndi to open up her mind that things are not always as they seem.

    I’m just sayin…

  11. Cyndi, i have met Amanda and she is real, and very autistic. you, like a lot of people out there, need a little more imagination to imagine that there can exist things that you have not seen. it’s called learning when you come across something you didn’t know was possible. amanda suprised me when i first read her, but then i got to know her online and eventually even in person (i met some staff women, too, and that caseworker). just open your mind to more possibilities of reality.

  12. Just to mention this:

    I’m not autistic, and in fact many of my abilities and disabilities are opposite of those typically seen in autistic people.

    But. When I get excited about something, I jump up and down and flap my hands.

  13. What AnneC said. She and I seem very similar to me in many important regards yet I do suspect we appear very different to others in regards that seem important to them (which is one reason I hate the usual divisions in autistic people, because they’re all about what matters to specific other people).

  14. I don’t know why, but the oft repeated “my staff” irks me. It seems elitist in a weird way. “My staff ” this. “My staff” that.

  15. Probably connotations that don’t exist for the person writing it. I mean it no different from “my mother” or “my brother” or something, and I say it that way out of habit to preserve their anonymity. Staff is the word used most frequently, there are other terms some people use (aide, personal assistant, etc) but I’ve never gotten comfortable with them (“staff” always seemed the least elitist of the bunch to me, and also the shortest, and it’s what they tend to call themselves). Remember that in this system staff are above clients in the power hierarchy. So when we talk about “my staff” among each other, we’re talking about generally someone with a lot more power over us than we have over them. I suppose for people unfamiliar with this system it could seem like we’re saying staff are beneath us (based on, say, the perspective of a manager or something), but it’s really the opposite.

  16. I am professionally trained in video, I know exactly how CNN works, this was my criticism at the time, that they produce a nuanced constructed image of what the script requires.

    In part my own video “whichever way you look at it, it’s still autism”, covers the way in which images of autism are constructed in which I demonstrate that with pictures from my own past, and don’t I look cute? :)

    http://www.shiningcityvisions.com

    It is of course an ironic construction of my own and uses the obvious presence of the TV studio as a form of rhetorical trope.

    of course my ability to produce that would be effective proof for many of the Schafer persuasion that I have far too much ability and insight to be autistic myself.

    For what it is worth I ran an early copy of the script past Lorna Wing, and she was broadly in agreement with the conclusions I come to in it with regard to the diagnostic categories.

  17. Well it happens all the time with the shows because, the reporter thinks some information is important to add to the show but the editor may think like it’s not that important. So to get the good result of any show they both must work together.

  18. Heh. “whoever works along with you”.

    I can see how a string of comments that contain more fact than formality — i.e. don’t contain formalities like “I am sorry Amanda” and “Just my two cents!!” — can come off as, y’know, “mean”. And maybe even as bullying. There are, after all, a lot of us. And a lot of us are pretty awkward with formalities. Ooogedy boogedy. I am sorry, Cyndi. I flap too.

    Heh. “I hate to be called ‘mild’ anything”. ; )

    Re: “my staff”, I’m generally cool with that rather impersonal usage, simply because I’m pleased when I see paid assistants working in an ideal fashion, i.e. as a *tool* rather than as the dominant person in a power relationship. Kinda like language interpreters should just translate as closely as possible to what’s actually being said and not try to add their own “flavor” to the mix. And in that sense it’s also refreshing to see people communicating with each other through an interpreter while looking at *each other* instead of focusing only on the interpreter.

  19. I have always found the “whoever works along with you” comments to be hilarious. Not only is Amanda not autistic, but she is a non-autistic adult who can’t possibly produce all that she’s produced by herself. Is the theory that she’s a paid actress? Can you imagine what it would cost to bankroll this project–you have at least 2 people on payroll, and I guess Laura Tisoncik gets a per diem (is she autistic in this theory, or is she a full-time actress as well?), the fake apartment that they have to have frequent access to over time, the cat trainer, the writing and video by whoever supposedly produces the material–and wouldn’t someone be complaining about paying for the time spent writing about rabbits and asthma or filming a cement mixer decked out with Christmas lights? These little touches make the whole enterprise more believable, I suppose.

    And speaking of believability, if it is all a hoax and there’s a secret website that pays $5 every time you post on a blog saying “I’ve met Amanda and she’s real and she’s definitely autistic”, I would like to know the url as I assume it’s not required for a person to have actually met her to get paid for posting that you have, and I could use a little extra cash.

    Sherri

  20. Cyndi has attempted to leave another comment that (a) makes clear that malicious is the least of it and (b) makes clear that it’s specifically me she’s targeting, not other people who look unusual and wear diapers and type well. The benefit of the doubt is officially rescinded, Cyndi please go away (and stop trying to demonstrate for us what badgering actually looks like).

    She and others might not have noticed that yesterday I changed my About Page to add the following (or for that matter that this blog has been declared a gossip-free zone for awhile now). Others may want to take note because it does not just pertain to discussion of me, it also pertains to certain kinds of popular gossip about other autistics as well. This is different from disagreement, even heated disagreement, with a person’s principles:

    I will no longer be accepting comments that attempt to divert discussion of the issues raised within this blog into an endless discussion of whether I exist or not, or whether I am autistic or not. I have proven myself on multiple occasions to the state of California, to the federal government of the USA, to the state of Vermont, to CNN, and to MIT, with the help of doctors who have known me since I was 13 and relatives who have known me since birth. I have better things to do than prove myself to strangers on the Internet, and such discussions only serve to divert energy from the real issues. I will also not be allowing debate over other autistic people’s existence or authenticity. This kind of gossip is a favorite pastime in the autism community, including among some autistic people, but it is a destructive one.

    I will quote from Jim Sinclair’s article Autism Network International: The Development of a Community and Its Culture:

    Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

    1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

    2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. […]

    3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.

    This is a blog by a self-advocate who has participated in several aspects of the disability rights movement including autistic liberation, psychiatric survivor, mainstream disability rights, and developmental disability self-advocacy. It is meant largely for discussion of these issues. As such, when I detect any of the above tactics, they will not be allowed, as all they do is hinder the purpose of discussion here, and they add nothing of value or substance.

  21. Concur with your last comment, Miss B. Are you quite sure of all details of your position on “mental age”?

    I think Cyndi could qualify as “immature.”

    (and I mean that in a *bad* way, as in being deliberately rude to you in public, and maliciously so.)

  22. Given the amount of abuse I saw you take from John Best Jr before you finally got fed up enough to ban him from this site, it boggles my mind to even try to imagine what Cyndi’s second post said that was bad enough to convince you to kick her off too. (Or is your tolerance level for verbal harassment declining from “Ultra-Saintly” to “Normal Range”?)

  23. Re: “I can’t fake NT to save my life, although I can do a passable ‘generic crazy'”…LOL! I laughed mostly because there is such a great disparity in my own experiences that you’d think I COULD “fake NT”. Of course, that isn’t possible, it’s just that my particular disability is one that can appear to different degrees between situations, making it appear that I am almost NT on some occasions (and far from it on others). What’s really weird is that the disparity between various cognitive functions is such that there are times when people see both sides and are completely at a loss to understand what’s happening. Then you try to explain the underlying neurological glitch and usually lose them completely. But once in a while I do manage to find an unusually enlightened person who “gets it” well enough to actually help me disentangle from all the confusion. If I could just manage to hold onto that long enough to find myself in a productive career, I’d be far more content. For now I guess I’ll just have to be happiest playing with my two spoiled felines. They like me quirks, glitches and all.

  24. I flap. I have an undergraduate degree in something-or-other, summa cum laude. I don’t need diapers. I think functioning labels are not appropriate in most, if not all, situations, in that they are too general and tend to limit imagination and accuracy at the same time.

  25. My comment about not needing diapers was just because I was being factual about some stuff Cyndi brought up as apparently contradictory “benchmarks” of how one is supposed to behave in relation to one’s “acheivements” like an undergrad degree. Actually, although I do not need diapers, I can not hold urine very well. When I was younger I resorted to just not drinking so that I would not get into a situation where I had to go and could not hold it. I developed kidney stones. I don’t know if the lack of retention is related to autism at all but I *am* autistic, and I *do* flap, and if you are driving and I say I have to go, you had better pull over to the side of the road.

  26. I have the opposite problem. My bladder gets overstretched to the point where it needs catheritization. I sometimes don’t realize I need to go, sometimes get so mixed up in intertia that I can’t get from the task I’m doing to using the restroom, and other times can’t ask people when I need to – for example if someone else is driving, or if I’m in a situation where I need to say something not just get up and leave. I have to set alarms to wake myself up every night because I don’t realize I need to go, and don’t have accidents until my bladder is overflowing (and have been warned that causes kidney damage to let it go that long.)

  27. Pingback: Development and Regression: Kennedy Krieger research and Donna Williams interviews Amanda Baggs

  28. Hi Amanda,
    What America saw on television was 45 minutes of hundreds of hours of video tape. Extreme Makeover did not focus on what my children couldn’t do, but what they COULD do. They did not show Caitlin stimming, or taking 45 minutes to tape the scene where we watched the demolition. They did not show Kiernan buzzing and jumping during the reveal. If it were up to me, they would have shown the bad with the good.
    I always said that they would never have had you on CNN without background checks. We were on Good Morning America a couple of years ago and they did their homework also.
    There are people who are unhappy in their own lives, so they must pick ours apart also.
    Stay strong…
    Jeanette

  29. What Cyndi said about ‘working with people like that’ really disturbs me. *I* work with (technically volunteer with, since I’m not paid for it) ‘people like that’ and I would not be surprised if the diaper-wearing minimally verbal autistic boy I work with turned out to be just as smart and capable as Amanda Baggs. If he can find an effective communication method such as Amanda has, he’d probably have a lot of insightful things to say. I can see that clearly by how he reacts to things. He notices the difference between autistic and NT, for example, which is supposedly beyond the abilities of ‘people like that’. He knows I’m autistic, in fact in a way similar to him (qualitatively, not quantitatively). I can tell he knows this because of the way he reacts to me – the way he looks at me when I stim in front of him, the way he plays with me (interactive stimming, which is probably pretty hard for NTs to do), etc. He’s been called profoundly retarded but that is clearly an extreme underestimate of his abilities. He just finds it hard to show what he knows in a way NTs understand.
    The idea that someone would look at the way he acts and what he can’t do and assume someone like him couldn’t write insightfully sickens me.

  30. Amanda:
    Great job! Not easy to put yourself out there to the public! Regarding the omissions by the media that can “change” the content from what you intended…PEOPLE Magazine did an article about autism and FC with my son participating, and in a sidebar, they showed an augmentative communication device with a title, “How Jamie Burke Learned to Speak..” We had never even seen that device!! Again, hope life doesn’t get too overwhelming with all the publicity. Thanks again, for all you are doing. Best, Sheree and Jamie Burke

  31. I’ve noticed that autistic people tend to speak in disclaimers… “I’m not trying to say A, B, or C, just Z”. Just the fact that the blog entry comes across as a big disclaimer (“Here’s all the things that CNN didn’t show you about me”) shows to me that you’ve got autistic tendencies.

    I also struggle with the “people not believing I’m real” issue, although for me it manifests as a difference between how I look “on paper” and in reality. I have been somewhat successful educationally, and happenned to be lucky that what I was studying (computer programming) was very in demand when I was doing it.

    I remember when the TV show “The bachelor” came out and they advertised it with a commercial that said “He’s six feet tall, dark haired, ivy league educated, and a self maid millionaire”… insert shots of women swooning. All those external things were true of me, the very things that supposedly should make me super popular, but yet my AS and other issues have meant that I can’t find people to hang out with me much less date. It’s sad not being able to really explain why someone with “such potential” would be so socially disconnected.

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