Category Archives: Outside Perceptions

Editing.

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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.

If you recognize me.

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This is a purely pragmatic post I’m trying to write here. I don’t mean any offense to the guy I talked to today. I know he didn’t mean anything bad and didn’t know any of this stuff. He was perfectly nice to me and had no way of knowing what was going on. Etc.

If you recognize me in public. And you don’t know me. (Knowing me online counts, as in interacting with me a fair bit on blogs and lists and stuff. That’s fine. That’s knowing me for these purposes.) There are some things you might want to know before you decide to strike up a conversation.

Today was one of two days this month I’ve been outdoors for anything other than a medical appointment. I was going to the bookstore and then I needed to take care of something at the bank. The reason I haven’t been able to go out much is the grass pollen, which is my most severe allergy, and I’m still not fully back to normal from the last asthma mess. (That’s why, if I’m outdoors, you’re likely to see a pollen mask on me, although I take it off indoors.) As in, I haven’t even crossed into the mild range of asthma yet, although I’m getting better.

I can only go out when there are staff with me. Staff come in shifts at certain hours. The morning shift ends at 12:30.

I was on my way out of the bookstore around 11:30 when someone saw me, said he’d seen me on TV, and struck up a conversation. I have a very hard time getting out of conversations. I wish my staff had been there. She wasn’t there that moment because she was going outside for something. I had no way of contacting her. When I’m concentrating on talking to someone I have a really hard time simultaneously figuring out how to stop talking to someone and why to stop talking to someone (or why to do anything for that matter). It took everything I had to get out of the conversation half an hour later.

Half an hour later it was too late for my staff to take me to the bank. It was also too late for her to wash my pollen mask, a task which had to be moved to the next shift, and depending on how long it takes to dry it might affect my ability to go out to a planned event tomorrow.

I am not trying to be unfriendly. I am not trying to imply that anyone who has done this to me has caused all these things on purpose. But please be aware that if I’m out lately, I’m out on a time schedule, that the amount I have to go out affects my health in various ways, etc. So I might make an exception if I already know the person (the same way most people would make some exceptions, even ones that change their plans or health, for unexpected friends, including online friends), but if I don’t know you already, then getting to know you right then isn’t going to be the best time. And that since I have a really hard time disentangling myself from conversations (because of the amount of attention the conversation itself takes), it’s probably better not to start one unless you’re going to introduce yourself as someone I already know or something, because staying in a conversation with you for half an hour doesn’t mean I want to, it just means I’m doing what I think I have to, which is come up with new things to say in response to whatever I can parse out of what you’re saying (and I am likely parsing far less of what you’re saying than it might sound like, I’m very good at sounding like I know what people are talking about when I don’t).

And (probably obviously) this doesn’t apply to social events or conferences where the point is partly to meet new people. And unfortunately probably most of the people likely to do this to me have not read this blog. But I thought it was worth mentioning in case anyone runs into me in a store or something (this sort of thing has now happened more than once, including while trying to visit and advocate for a friend in the emergency room, although in that case the friend was recognized too I think so that got interesting).

Mental age is not acceptable.

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In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.

“Been there. Done that. Preferred to grow.”

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Found through a post at Moggy Mania:

The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow.

I’ve read McDonald’s (auto)/biography before. And she has a webpage here

A quote from her article:

At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat the time of my breech birth. Like Ashley, I can’t walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn’t provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn’t learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, “Been there. Done that. Didn’t like it. Preferred to grow.”

[…]

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means “brain damage which isn’t going to get worse.” It’s occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley’s doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

I’m particularly (but pleasantly) surprised that she stood up forcefully to Peter Singer, because I know he’s a personal friend of hers, and that people often won’t challenge their friends in public. And he was badly in need of challenging here by someone in the know.