Amanda Baggs is an autism-rights activist. She has her own blog, and makes her own videos explaining how she experiences and views autism. Last January, she became somewhat of an internet sensation when she posted one particular video on YouTube called “In My Language". To date it has been viewed nearly 700,000 times.
You can also watch Amanda's video "If You Can Do X, Why Can't You Do Y? My All Purpose Answer" here.
Q. I WANT TO START BY ASKING YOU ABOUT YOUR VIDEO IN MY LANGUAGE: FOR THOSE PEOPLE WHO HAVEN’T SEEN IT CAN YOU EXPLAIN WHAT IT’S ABOUT?
BAGGS: I made a video and put it on YouTube. It’s called in my language and it was made because of a little girl who has cerebral palsy and her parents took her female parts off of her without getting consent from here. And at the time that everyone was talking about it, they kept saying she had the mind of a very young child, like an infant and that she didn’t have language, so there was no way of communicating with her. And I got very angry that nobody was giving any chance, as usual, to the kinds of language and communication that people who are non-standard in some way often develop whether or not we also develop more standard language including people that Dave Ingsberger(?) has described as a linguistic minority of one. And so I made a video from my own point of view of what I consider my native language to be, which is quite outside of the English I was taught growing up. And from that point of view, trying to point out how people who have our own language and way of communicating are treated and dismissed as non-persons and lessened until we learn more standard ways of communicating.
Q. IN THIS VIDEO YOU MADE, WE SEE YOU DO THINGS LIKE RUB YOUR FACE IN A BOOK, TWIRL STRING, PLAY WITH WATER. AGAIN, FOR THOSE PEOPLE WHO HAVEN’T SEEN IT, CAN YOU EXPLAIN WHAT YOU’RE DOING AND WHY YOU ARE DOING THOSE THINGS IN YOUR VIDEO?
BAGGS: In this video, I showed a lot of different ways that I interact with my environment. They come a lot more natural to me than the ways I’ve been taught to interact with people, and they might include what looks like just fiddling around with string or smelling books instead of reading them, or that kind of thing. Those are things that left to my own devices I’ll just sort of start doing automatically, but they’re part of how I interact and process my environment. And when I’m outside the normal ways, people conceive of these things. I really consider them a form of communication between me and things around me. I don’t consider them to be just these lifeless objects at the time, just diddling with for no reason or something. It’s part of how my body communicates with its environment and it’s a much more normal thing to me than staying here and typing this.
Q. WOULD IT BE FAIR AND ACCURATE FOR ME TO THINK THAT YOU LIVE IN A WORLD THAT IS MUCH RICHER IN TERMS OF SENSORY EXPERIENCE, IN TERMS OF COLOURS, IN TERMS OF TEXTURES, THAN A NON-AUTISTIC PERSON LIKE MYSELF? AND, IF SO, IS THAT COMMON AMONG AUTISTIC PEOPLE?
BAGGS: I think that the world is pretty much infinitely rich and that different people can interact with different parts of it. And not a single one of us can possibly ever even approach how much there is to it overall. So to say that one person’s experiences of life are automatically richer than another’s isn’t something I’d consider accurate. But I do seem to deal with a much broader range of sort of direct sensation than most non-autistic people I meet do, although artists and musicians seem to often do things more the way I do. And yes, it’s relatively common among autistic people to experience the world this way. I know a lot us who do. Donna Williams has written a lot of brilliant stuff about it and so have a lot of others, but there are also autistic people who don’t experience this and there are some non-autistic people who even if they aren’t getting the sheer volume of sensory information that autistic people tend to, they will still interact with the world closer to how I do than some autistic people do.
Q. WHEN DID YOU POST THE VIDEO AND WHAT WAS THE REACTION TO IT?
BAGGS: I posted this video in I think January or February of 2007. I hadn’t really had a huge number of people watch my videos until then, and I wasn’t expecting many people to watch it this time. And then people started watching it and I could tell because the numbers on the video kept climbing. It lists how many people view it and it kept going up to 10,000 and I was really alarmed, and then it went to 20,000 and it started really creeping me out. I just wanted to hide under a desk or throw a towel over my head or something. I like making videos, but I don’t so much like being paid attention to more than my videos are and people responded in also lots of ways I didn’t expect. They responded with these very positive viewpoints. Some people started ascribing assorted strange New Age sorts of philosophies to it that I didn’t really intend. Some people started saying I couldn’t have made it, including that I couldn’t have made it because it used standard Western musical notation for most of the notes, even though of course that’s the music I was brought up on, so of course I use the same notes. And a lot of people seemed to think I made the video about autism, even though it was really clearly marked as being dedicated to Ashley X., who is not autistic, and that surprised me because I didn’t really intend it to be about teaching people about autism. And then people said the editing was too good or something, and that confused me because I’m very much an amateur and I know it. And then the responses I liked the most came from people who were mostly not autistic, but who had their own takes on it, like those that blog feminists, women of colour and it talked about the similarity of these experiences to their own experiences, for instance growing up speaking Spanish and being considered stupid and less of a person for it. Or someone who had brain damage talked about in (unclear) facility where people would try to communicate without language and they would get told they had to use language or else they wouldn’t get what they wanted, even if they couldn’t use language. And then various artists and musicians who really understood what I was doing from an aesthetic standpoint because it’s how they relate to the world too, and all those things I liked because they were taking it and applying it to various situations instead of narrowing it down to being about one person and one autistic person in particular.
Q. HEALTH CARE PROFESSIONALS DEFINE AUTISM VARIOUSLY AS A “PERSUASIVE DEVELOPMENTAL DELAY”, AS A “SOCIAL AND COGNITIVE DISABILITY”, AS A “MENTAL DISORDER”: WHAT DO YOU ACCEPT AND WHAT DO YOU REJECT ABOUT THE WAY AUTISM IS CURRENTLY DEFINED BY THESE “EXPERTS”?
BAGGS: A lot of professionals have different ways of feeling autism and I sort of accept that these are things that from their viewpoint are what they observe, like they see a lack of social relatedness and it’s not necessarily what I see but it’s what a person would see if they look for only one kind of social relatedness and end up with some sort of self-fulfilling prophecies as far as seeing what they expect to see. I accept the view that autism is basically a word for a sort of person whose brains work in certain ways and we differ from other people both in terms of thinking and perception, although perception is really just sort of one piece of thinking, not separate from it. And I differ when people just see it as a lack of something rather than just something different because most evidence points to us having certain attributes most people don’t as well as lacking certain attributes most people have. And I do accept that autistic people are disabled because I view disability close to the way the disability rights movements tends to view it, which is that it’s the intersection of certain forms of human difference, even very extreme forms of human difference. And then our society that plans for certain forms of human difference and rejects others as having needs that are special instead of needs that are taken for granted and planned for.
Q. CAN YOU EXPLAIN THE CONCEPT OF NEURODIVERSITY, ESPECIALLY AS IT RELATES TO AUTISM?
BAGGS: It’s difficult to explain neurodiversity because I have never myself had it explained exactly what it’s supposed to mean. But my guess is that it’s something about the idea that a person’s neurology can vary a good deal. There are so many different kinds of it and one isn’t necessarily or better or worse than another kind. But out view of this is firmly rooted again in the disability rights movement. I know some of the people who first started using the term and that’s how they used it. It was like the disability rights movement often talks about diversity of abilities in general and how many different ways there are to make a human being, and neurodiversity concentrates on the neurological parts of that, mostly brain related neurology. But it doesn’t have to just be that and a lot of people view it as only about autism because the concept comes from within the autistic community. But I really prefer a broader view of the term, where people with all sorts of different neurological variants, whether they’re within the standard range of neurology or not are accepted as part of humanity in general.
Q. YOU ARE PART OF THE AUTISM SELF-ADVOCACY MOVEMENT: CAN YOU EXPLAIN TO ME WHAT THAT’S ABOUT, WHAT YOU’RE TRYING TO ACHIEVE. WHAT IS IT YOU WOULD LIKE TO SEE?
BAGGS: I am part of the autistic self-advocacy movement. This is a branch of the disability rights movement that has things in common with the general developmental disability self-advocacy movement as well as the psychiatric ex-patient movement and the more mainstream disability rights movement. And what we’re about is very similar things and of course different people will have different opinions on what we ought to be about. We’re not a monolithic community but my opinion is that we would like the same rights as other people. we want there to be fewer barriers to our participation in society in general and in whatever things that we want to be doing in the same way, that other people want to do things. I mean I’m talking about the basic things people want. I’m not talking about necessarily frivolous whims that nobody would ever expect to get. And we don’t want to be seen as less than other people. We don’t want people to fix us. We want access to communication, education that’s actually appropriate to us. We want our focus within research on what autism is rather than how to prevent autistic people from even existing. We want to stop cruel and inhumane treatment of autistic people . We want parents to be able to raise children like the children we were without having to feel pressure to fix them, rather than to raise them and like any other kid, help them in areas they need help in and help them use their own abilities to learn how to get along in the world like anyone else. We want the same choice as other people have. We don’t want to be treated as inferior to other people. And basically if you look at other parts of the disability rights movement, whatever branches might be out there, we generally want all the same things with a lot of variation in our individual opinions of course.
Q. YOU SAID THAT YOU DON’T WANT PEOPLE TO FIX YOU. ARE YOU AGAINST THE IDEA OF FIXING OR CURING AUTISM IN ANY CIRCUMSTANCES, NO MATTER WHAT, EVEN IF THE PERSON IS SEVERELY DISABLED, EVEN IF THEY’RE SELF-DESTRUCTIVE, EVEN IF THEIR PARENTS SAY THAT THEY CANNOT CARE FOR THEM BECAUSE OF BEHAVIOURAL ISSUES? NO MATTER WHAT, YOU THINK THIS IS INAPPROPRIATE?
BAGGS: I think that the idea of trying to fix people in general is inappropriate. I don’t think we would have a very strong or accurate viewpoint if we somehow restricted this viewpoint only to people who are as close to the norm as possible. In fact, I think the further a person lies from the norm, the more endangered they are by the idea of being broken and needing to be fixed. To give an example, you can have a child who is completely non-disabled in every other way, but the kid starts hanging around with people who encourage them to be self-destructive. And through various sorts of pressure they eventually get addicted to drugs and a lot of other things. And when that happens, people don’t focus or shouldn’t focus on here is this broken person who needs to be fixed. Here is this person but we need to totally erase all of their neurology that tells them to belong to our group socially and to fit in, or something like that. You would instead look at what the problem is, teach them how to deal with their desire to fit in without having to succumb to negative pressure from people around them. Teach them to get along in life without having to use drugs or something, and all those sorts of things. And when it’s some non-disabled child, you never hear, oh this person’s social circuits are making them succumb to peer pressure so we need to turn them into a person who doesn’t want to belong and doesn’t want to fit in and have friends. But when a person is autistic and for instance stars getting very involved in self-destructive behaviour of their, like banging their head or something, suddenly people want to fix the autistic person rather than get to the roots of the problem and help the person to live with the neurological structure as well as possible and deal with their weak areas as well as their strong ones on their own terms, like anyone else. I also want to say that when I was younger, I acquired a movement disorder that is related to autism and I had a lot of changes in puberty, and I guess about a third of autistic people experience some loss of abilities in puberty, and that is what I was going through. And I was losing academic abilities. I was losing certain sorts of comprehension I’d gained. I was losing the ability to control my body in certain ways, to speak and so on, and this was gradual. But I could see where it was ending up and I was horrified because I had completely bought the idea that someone like me was broken and needed to be fixed. And I kept hearing that the only two things that could help me were to be institutionalized forever or to be fixed until I was something considered more normal. And I knew that I didn’t want to be locked up and I also knew that I didn’t have the ability to be normal or I didn’t have the ability to even keep up an act of being normal. So I did a lot of incredibly destructive things as a direct result of all that. I tried to kill myself to get out of the situation. I banged my head constantly out sheer frustration. I did a lot of other things like that and my parents were at one point told that they might have to have me taken away from them and made into wards of the state. They couldn’t control me and neither could anyone else, and that was just how things were at the time. And when all this was going on, I would not have been nearly so confused or in so much trouble if people had known how I operated and tried to help me learn to operate as well as I could within the areas I could operate in. And that’s what I got from the autistic community was assistance from people who had been there, and I should note that it was in the autistic community I learned to stop banging my head all the time. I couldn’t learn it from someone who had never been there. I couldn’t learn it from psychiatry or from anyone whose goal was to fix me or bring me as close to an appearance of normality as possible. And I think people who are in the position I was in or even worse positions need even more the acceptance of who they are coupled with the desire to help them be the best version of themselves that they can possibly be and that this is far more important, the more problems they have. And dealing with those problems is not the same as wanting to make them into a person who is not autistic altogether. Of course I think people ought to have a choice about how they feel. I have friends who do want to be fixed. One of my friends wants to be non-autistic but thinks her daughter, who is more severely disabled than she is, ought to remain autistic because it’s what her daughter wants and has communicated to her. And I accept that, but in general I don’t think the attitude of fixing someone helps anyone, least of all people who are so far from the norm that it’s obvious that they’ll never be made into the norm.
Q. A LOT OF PARENTS DESCRIBE THE EMOTIONAL EFFECT OF FINDING OUT THAT THEIR CHILD IS AUTISTIC AS BEING LIKE A “DEATH IN THE FAMILY”… THERE’S ALL THIS DOOM AND GLOOM LANGUAGE; AND MEDIA STORIES OFTEN USE LANGUAGE TO THE EFFECT THAT IT’S A TRAGEDY OR CATASTROPHE: WHAT’S YOUR REACTION WHEN YOU HEAR AUTISM DESCRIBED IN LANGUAGE LIKE THIS?
BAGGS: It bothers me to hear autism described as a tragedy. It’s one of the oldest disability stereotypes in general. That it’s just absolutely tragic and I don’t think that language helps anybody. It doesn’t help parents who are going to be terrified by it. It doesn’t help autistic people who are going to view our lives as not being real or good enough in some manner. It’s going to affect everyone and it can even become a horrible, self-fulfilling prophecy. There’s actually been at least a tiny bit of research done that showed parents’ attitudes towards autism. If their attitudes were negative like it had negative effect on the abilities of the autistic people themselves by adulthood. It just isn’t good for anyone. Some people think it is or may find it cathartic to use language like that. But in extreme examples it’s even been used, like for instance when autistic people are murdered, people who kill us usually get lighter sentences than if they killed a non-autistic person for the exact same reasons. And a lot of that is because I mean when you hear someone saying, like one person said, that autism is worse than cancer, AIDS and 9-11 combined. Then it’s very easy to say, well it must be better to be dead than to be autistic. And I mean one time people were saying after a woman killed her teenage autistic daughter in a very premeditated way and very obviously against the daughter’s wishes, they said something like, why should she be sentenced to anything? She was already sentenced to 14 years with this girl. Wasn’t that enough. And that’s absolutely horrifying, the idea that we can be considered victims of a fate worse than death, or even considered to be people where living with us is the same as a prison sentence. I don’t care how cathartic it is to use language like that. I don’t care how people justify it. The price we have to pay which can be as much as our life itself is too high for it to be appropriate to spread that kind of garbage around – around about us. It’s a lot like what happened to Tracey Latimer when everyone was defending her father for killing her. And that stuff just breeds more death and destruction. I know that Sobsey has actually done a fair bit of research into what happens when you excuse things in that matter and it turns up resulting in more killings and it just gets horrible.
Q. YOU OBVIOUSLY FEEL REALLY PASSIONATELY ABOUT THIS. NEVERTHELESS, THERE ARE PEOPLE WHO ARE GOING TO WATCH THIS AND THEY’RE GOING TO FEEL SAD FOR YOU THAT YOU’RE DISABLED, SAD THAT YOU’RE AUTISTIC. WHAT DO YOU WANT TO SAY TO THOSE PEOPLE?
BAGGS: I know that there are people who feel sad for me because I’m autistic or because I’m disabled in general or because I’m more severely disabled in general than I used to be. And what I say to that is that it is a waste of time. Pitying someone else is as destructive as self-pity is. It’s also not sad to me that I’m disabled any more than it’s sad for me that I’m female or from California or anything else. It’s just another set of attributes about my body. It’s not like a person stops being themselves when they’re disabled or stops being real. And I mentioned before, there’s an infinite amount of complexity to the world. And even if I was somehow limited in my ability to experience, which I don’t think I’m more than anyone else is, there’s always more depth and more complexity and more reality the more you can experience. And either everyone is missing out or nobody is, but compared to how much of the world there is out there, it’s all so close to each other as to be like a millimeter apart. Our experiences (unclear) for a lot in some ways but we’re part of the human condition and we’re not a lesser part or a tragic part or sad or pitiful or pathetic.
Q. DO YOU EVER WISH THAT YOU WERE NOT DISABLED? DO YOU EVER WISH YOU WERE NOT AUTISTIC?
BAGGS: I think everyone wishes they were someone else some of the time. But I think that’s a waste of time in general. I mean what’s the point of wanting to be someone you’re not. It doesn’t help anyone sit around thinking that way. I have to say that the main times I want to be non-autistic, what I really want is more like for people to not treat me badly, to not have been raised with ridiculous sorts of expectations that don’t match reality at all, to not be in a situation that’s structured so that I would look at myself as a broken model of someone else’s perfection or something. So it happens but it’s never thought on my part. It’s not something that actually has (unclear) or anything.
Q. DO I UNDERSTAND CORRECTLY THAT YOU WOULD DESCRIBE YOURSELF AS BOTH DIFFERENT AND DISABLED AS OPPOSED TO DIFFERENT BUT NOT DISABLED? AND THAT’S AN IMPORTANT DISTINCTION?
BAGGS: Some autistic people consider themselves different but not disabled. I don’t think that way and it’s not useful to me to think that way. I think I’m both different and disabled and that disability is in fact the intersection of human difference with a situation where it’s not planned for a matter of course and the sorts of different … taken for granted. I have a real problem also with the idea that accepting differences should stop at this line where people are considered more and more severely disabled which generally means more and more outside the realm of what most people would consider normal. And I find that really kind of disgusting because it means, okay, well I am fine, bit you’re broken. It seems really condescending and patronizing. Disability is a part of human difference. It’s … separate from it. It’s not like here’s different and then over there is disability. And even people who say different, not disabled, they tend to have the same goals as people in the disability rights movement but they want to reinvent the wheel. It’s like they think that if they’re not defective then they’re not disabled and then they ignore the decades or even centuries of disabled people who have tried to point out there’s nothing wrong with being disabled and it just seems to show a lack of exposure to how disabled people actually think about themselves and it reinforces ugly stereotype about other forms of disability besides autism. It reinforces like the idea that to be autistic is okay but to have cerebral palsy that’s not okay and that kind of thing. And I don’t think that’s a useful thing to do to put some people in the okay pile and some in the not okay pile. And to reinforce disability stereotypes for others at the same time as you are escaping them yourselves. There was a wonderful play that (unclear) talked about seeing where he was watching a group of developmentally disabled actors and they had a preacher telling them they needed to stand up and be healed. And they started saying, you can’t heal us, we’re not sick. And they chased him off the stage until one person stood there saying, you can’t heal me, I’m not sick. And that sort of thing is fought for by a lot of people, not just autistic people and to say we’re not disabled just seems to show a lack of understanding as to what disability means.
Q. I’M GOING TO MOVE ON OR RATHER MOVE BACK TO THE VIDEOS. AND I’M WONDERING AT THIS POINT IF YOU CAN GIVE ME AN OVERVIEW OF HOW YOU MAKE YOUR VIDEOS, HOW YOU EVEN LEARNED TO MAKE YOUR VIDEOS.
BAGGS: I make my videos on my own. It often takes a really long time because of that but some days I am just in the mood where I can do it all in one day. I learned to do it just by doing it. Nobody taught me anything except someone showed me how to caption it but that’s all. And I use a camera to record the video. For a while I had a camera with a very short time so I would just record a tiny bit of video and then start over again. There was no tripod so I just had to set it on furniture and things like that. I have a tripod now so I use that and I take all the video, get it on to the computer and then I use a variety of programs to convert the files, edit them into a movie, caption them and then convert them back to something that can be used on the internet. I really learned this by trial and error. Nobody showed me or anything. And I also finally got software where I can record sound separately from the video so sometimes I can do that now. I used to have to just use whatever sounds were in the background at the time.
Q. HOW MANY VIDEOS HAVE YOU MADE SO FAR? WHAT KINDS OF THINGS DO YOU CHOOSE AS YOUR SUBJECTS AND WHY?
BAGGS: I’ve made several videos. I don’t know how many. I’ve chosen the subjects just by what I’m responding to at the time. It’s very hard for me to just start it on my own. I need something to sort of trigger me into making it and then I make something. I’ve chosen all kinds of topics on that basis. Some of them related to autism, some to disability, some just to various other things and sometimes in response to other people online and sometimes not. I’ve also done ones like I made my father a Father’s Day video and I’ve shown my cat drinking out of the sink and trying to walk my dog in the snow and that kind of thing.
Q. SOME OF YOUR VIDEOS ARE MORE SERIOUS THAN OTHERS: YOU MADE A VIDEO ABOUT MAKING TEA. WHY DID YOU MAKE IT?
BAGGS: I made a video once about how to boil water the easy way. It was sort of showing the condensed version of what it’s like for me to boil water on a bad day. But I was aware it looked really funny because I run all over the kitchen doing everything but getting to the water and then I forget what I’m doing and even come back again and that kind of thing and it’s real. But it’s also funny. I based it on something I wrote once which was how to make a phone call in 70 easy steps. And I outlined all 70 steps I’d taken that day to make a phone call and that kind of thing is meant to be funny but also to convey that it’s really like this for some of us on at least some days, some of us all of the time. But whatever it is it is just sort of amusing, even if it’s serious. In fact, I think the more serious something is the funnier it is sometimes.
Q. WHICH LEADS US A LITTLE BIT INTO A DISCUSSION OF HOW YOUR AUTISM AFFECTS YOU IN PARTICULAR: SO BOILING WATER IS PROBLEMATIC BUT BAKING, IT SEEMS, CAN BE REASONABLY EASY. CAN YOU EXPLAIN WHAT THE DIFFERENCE IS?
BAGGS: I don’t know entirely what the difference is between boiling water and baking or in general cooking and baking because I was brought up being taught how to cook but not how to bake. And then one day I baked a fairly complicated thing and it turned out great and I kept baking and it kept turning out great. So I don’t know why I can bake but not cook. I know that baking can be as hard as boiling water sometimes but sometimes it isn’t. And also I know that somehow with baking it seems like the materials I’m using tell me how to use them the same way this keyboard tells me how to type and the computer tells me how to interact with it or something. It’s like my body somehow responds to some activities better than others and so they go more smoothly than others just like when they measure how stressful it was for me to type it normally (unclear) …. But any other movement, even slight, is extremely stressful on a physical level and that’s because the keyboard tells me how to type but nothing tells my toes how to wiggle or something so the toe wiggling takes more effort than typing. Even (unclear) technically less complex and it’s like that for a lot of things. They’re very different for me even if they look similar to others. And one example I used in another video is I show how most people can name colours but they can’t name a musical note just from hearing it and certainly can’t do so instantly but I can do both. So to me they seem logical to both be part of the same skill which is identifying the frequency, range of light or sound. It’s the same thing to me and yet for other people it’s really not the same. It’s not neurologically the same action and a lot of things about neurology are like that. And the further you get into things like movement disorders and autism and other (unclear) the more you find these things where we have really good skill in one area and a seemingly related area we’re really bad at. And I remember hearing once someone talking about how Dr. Montron said you don’t … dog … cat with a debilitating tree climbing deficit, but a genius at fetching slippers. And in the same way autistic people’s skills don’t normally follow the usual … of what they are … developing and retaining them. So what seems logical to someone else won’t be for us.
Q. OKAY, WHAT I WOULD LIKE TO TALK ABOUT NOW IS LANGUAGE. YOU DON’T USE VERBAL LANGUAGE. IN YOUR PARTICULAR CAES, WHAT IS THE REASON FOR THIS? WHAT ARE THE ISSUES?
BAGGS: Well for a long time I had a pretty extremely unreceptive language and even more extreme when contrasted with what I seemed to be able to say and those two stuck together first off means I learned language very differently than most people do, almost the reverse of how most people do. I also learned writing before I learned to understand speech, and that is also the reverse of the usual. And then even after I had speech and all that, it was very difficult. It felt to me as if I was almost on fire inside my head every time I talked. But I didn’t know an alternative to it. And then when I hit adolescence that really started breaking down again and I started having more trouble speaking just like I used to have before that, and got more and more frequent. Like when I was 13, it was enough to call a neurologist, but it wasn’t happening every day. And by the time I was 15, it was happening enough that it was mentioned in our school. A combination letter (unclear) for it in school. And by the time I was 19, it was happening several times a day and by the time I was in my early 20’s, I just couldn’t do it. And it’s really a combination of things. It’s the unusual way I learned language to begin with .It’s the way I learned to speak before I learned what it meant, which means it’s all routed wrong in my brain to begin with. It’s the fact that I have to think and translate and speak and hear the sound of myself talking all at once, and it’s sort of a combination of all those things. At the very end of my speech abilities being useful it felt like I was grabbing on a steel lever and trying to hit a target across the room and always hitting the wrong target most of the time. And I know that when I type, if I said this to just say words as I type them, then it would not be quite as hard as speaking, but much harder. So I know that trying to deal with so many sources of input at once is another problem with it. But it was never easy or comfortable even when it was plentiful. And the reasons I can’t do it are pretty complicated.
Q. WHY DON’T YOU EXPLAIN TO ME AND ALSO EXPLAIN TO VIEWERS WHO WON’T UNDERSTAND IT HOW IT IS I’M HEARING A VOICE.
BAGGS: This is a machine that has a speech synthesizer built into it and I type something here. Or I could also use a series of onscreen menus and sometimes I do that as well, and that way I can get words to be written on the screen. Then I hit a button and it speaks the words out loud.
Q. AND YOU CAN IN FACT, IF YOU WISH TO, YOU CAN CHANGE THE ACCENT OF THE VOICE. CAN YOU DO THAT JUST TO SHOW US?
BAGGS: (Demonstrating) This is another one of the voices that I can use on this machine. And this is another one. It’s easier to type what I’m thinking than to say it with my mouth and it is partly because typing is by now such an ingrained way of communicating. But it also just really common in autistic people, even a lot of people who are designated technically as having Asperger’s, which requires normal speech abilities, often find it easier to write than to speak. It’s just a continuum from finding one easier but finding both possible, to finding only one or the other of them possible, or sometimes neither.
Q. YOU DON’T LIKE TO MAKE EYE CONTACT AND THIS IS ALSO QUITE COMMON IN AUTISTIC PEOPLE. CAN YOU EXPLAIN TO ME WHY YOU DON’T LIKE TO LOOK DIRECTLY AT PEOPLE?
BAGGS: I don’t like to look people in the eye. I was trained to do it at one point and therefore would do it. But I don’t like doing it except in two circumstances. If I am very angry or if I am in love with the person, then I might make eye contact. And I’ve heard similar things from other autistic people. The thing is that’s common in a lot of different species, not just humans, to find that contact threatening and invasive and not a good thing unless you are somehow pairing up or mating with someone or else angry at them. And even in some human societies it’s considered that way. So I think somehow we must just have a lot less comfort level with doing it than most people do. Maybe we’re not able to put that overlay of cultural acceptability over our discomfort with it, or not easily able to – I don’t know.
Q. HOW DOES YOUR AUTISM AFFECT YOU WHEN IT COMES TO DAY-TO-DAY LIVING? FOR EXAMPLE, WE’VE SEEN THAT YOU HAVE CARETAKERS, SOME ASSISTANTS WHO COME IN AND HELP YOU. GENERALLY SPEAKING, WHAT DO THEY DO FOR YOU THAT YOU CANNOT DO FOR YOURSELF OR THAT YOU WOULD FIND IT DIFFICULT TO DO FOR YOURSELF?
BAGGS: It’s very difficult to talk about daily living abilities and to separate out which parts of them have to do with being autistic and which parts have to do with other things. My friend Laura once said that people were always asking her to differentiate between back pain caused by her severe scoliosis that has the only vertebra she has left after fusion nearly dislocated all the time and back pain caused by her autoimmune disease. And she says how am I supposed to know? I only have one spine and I only have one body and one brain inside it, so I don’t know how much of anything is related to autism specifically, especially since autism doesn’t exist in the abstract, only in the concrete sense. But there are people who are called autistic. I basically have a lot of difficulty with anything that I can’t somehow trigger the movement for and if I don’t have a pattern of things to doing response to something, then I’m pretty much lost. I freeze up a lot, so even things I can do, I could freeze in the middle of and be unable to finish them. I’ve got very little stamina a lot of the time and that kind of thing. So they help me out with housework, they help me with meals and with getting started on eating them. They help me with showering. They help me with other areas of personal hygiene around going to the bathroom and stuff. They help me with moving around at all if I am really stuck for some reason. And basically it can range from helping me with absolutely everything, to helping mainly with starting me on things and then I can do them myself. Oh and they also help me out with taking care of animals.
Q. PARENTS TYPICALLY DON’T WANT THEIR CHILDREN TO HAVE A HARD TIME IN LIFE: THEY WANT THEM TO BE SUCCESSFUL, WEALTHY, HAPPY ETC, THEY WANT THE BEST FOR THEIR CHILDREN IN EVERY SENSE OF THE WORD. AND LIVING WITH A DISABILITY AND LIVING WITH AUTISM IN MANY CASES MAKES IT DIFFICULT FOR CHILDREN TO LIVE INDEPENDENTLY AND TO HOLD DOWN JOBS, ALL THOSE THINGS THAT PARENTS WANT FOR THEIR KIDS. CAN YOU UNDERSTAND THEN WHY PARENTS ARE LOOKING FOR “CURES” BECAUSE, AS THEY SEE IT, THEIR CHILDREN WOULD BE BETTER OFF?
BAGGS: I can understand why because I grew up in the same society as everyone else. And if people think that autistic people don’t absorb those values, then they’re fooling themselves. I had those values at one point in time. I think they are understandable in our society that values certain kinds of people over others. I also think they have a lot of underlying disability related prejudice that goes unexamined if they’re just taken as the natural only way you could think about things. I have relatives who lived in times and places where being autistic was not known about and also not considered a barrier, and neither were some other conditions for that matter, to doing whatever the person needed to do. I used to have a staff person whose family came from a village in Mexico and some of her uncles had what in America would be considered intellectual disabilities, but in Mexico they were just considered part of the village, and they had jobs. They got married. They had children like anyone else. So I am aware there are many ways to view things and that the way we are originally taught is not always the best way to view them. I think that in order for our society to truly and make sure that everyone will be able to at least have the bare minimum that they need. Then it has to really change to stop putting some people above others like that and to value certain contributions while saying that other people don’t contribute at all and therefore don’t matter. I think any society that ignores that is the worse off for ignoring it and I understand why anyone would have the views their culture has taught them. When I was growing up, my neighbour got multiple sclerosis and one day she was our neighbour and the next day she was in a nursing home, and her family only visited her once a week. She just disappeared to the world. That’s what a lot of us were raised with, parents included. A lot of parents today are my age and got the same message as I did, and I think it’s understandable but I don’t think it’s ethical in the end. I think it’s good to try to prepare your children for living in society, but I think it’s genuinely tragic when a person ends up being completely unable to measure up and then being shunted aside as a non-person or considered almost parasitical for the rest of their life. I don’t think the disability is the tragedy, I think the way people treat people is the tragedy.
Q. ESSENTIALLY WHAT YOU’RE LOOKING FOR IS A WORLD WHERE EVERYONE IS VALUED ON THEIR OWN TERMS AND PEOPLE AREN’T COMPARED TO EACH OTHER. AND YOU’RE SEEING DISABILITY AS NOT NECESSARILY BEING INHERENT IN THE PERSON, BUT THE IDEA THAT SOCIETY DISABLES PEOPLE? AM I BASICALLY GETTING THIS RIGHT?
BAGGS: Mostly yes. I mean in some places it’s considered absolutely horrible to have six fingers and in America, it might be weird but it’s not earth shattering. Whereas in Martha’s Vineyard, there was a time when deaf people were not disabled there because everyone spoke sign language. And yet deaf people are disabled if they’re in our culture, where there’s no sign language and no interpreters, and they’re considered less for not being able to hear. My brother is colour blind and that’s normal enough for him and doesn’t cause him any problems, and he gets very little trouble for it in this society. But at the same time, somewhere else could be considered awful and somewhere totally different could be considered totally normal. And I know people have a hard time the more extreme the condition seems to be, meaning the more different from the established norms it seems to be. But I really think it holds even for that. I mean if everyone used wheelchairs, then there would be doors that were too low for almost everyone to go in. There would be no chairs anywhere for people to sit on because everyone would bring their own. If people could walk and not use their own chair, they might have to crawl and to drag that chair everywhere they went because it would be considered too expensive to buy chairs for everyone. If most people were blind, then lamps would be considered an unnecessary kind of spending. It’s not that the variations in people don’t exist and it’s not even that they never cause problems. It’s that they’re so much pushed into this one category of people that’s seen as somehow separate from humanity in general, even though most people in their lifetime will be disabled one way or another. And that’s where the damage comes in is when everything’s set up for one set of people and not someone else. I mean even things that shorten the lifespan, if we lived as long as cats do, then it wouldn’t be considered tragic to never reach the age of 20.
Q. IN TERMS OF YOUR DISABILITY, YOU CAN WALK BUT YOU DO ALSO USE THE WHEELCHAIR AND WE’VE SEEN YOU DO A LITTLE BIT OF BOTH. WE’VE SEEN YOU MOSTLY USE THE WHEELCHAIR BUT WHEN YOU WERE BAKING, YOU WOULD STAND UP. COULD YOU EXPLAIN THAT?
BAGGS: Yes, I have several things going on there. I have a movement disorder where any voluntary movement uses up a lot more energy than it would for someone else because it takes more effort, and that means that I wear out faster and I have stamina problems that may well just be related to the movement disorder. And I also have joint hypermobility, which means that among other things, if I forget to wear my ankle braces, which I nearly always forget to wear and I am always misplacing them, then it really hurts to walk. It feels like there’s knives stabbing me in the leg, starting around the ankle because the joints there are too unstable. And also recently I’ve had a lot of trouble with falling a lot and injuring myself that way. And then with the movement disorder, I can freeze. And for instance, just before I got a wheelchair, I had a cane and a walker I would both use for balance and for sort of feedback on where the ground is for my arms. And I remember once going out with a group of other people It was some social group through our service agency, and we were at the beach and I froze completely sitting on the ledge out there, and I just couldn’t get myself to get up again. It wasn’t happening and I remember someone commenting that what we needed was a giant spatula to pick me up and put me down again in the car. And so the wheelchair acts like a spatula in those sort of situations. I also just before I got it would try to go out and I’d fall in public. One time I fell all the way down the stairs of a bus and onto the pavement, and that sort of thing really started making it difficult to get around. So all of those things are why I use one.
Q. I HAVEN’T ACTUALLY ASKED YOU ABOUT YOUR AUTISM DIAGNOSIS ITSELF: CAN YOU EXPLAIN IT?
BAGGS: My original diagnosis when I was about 14 was PDDNOS, which stands for pervasive developmental disorder not otherwise specified, and that’s kind of a catch-all category and is often used by doctors when someone meets the criteria for autism. But they want to basically either make it not sound so bad to the parents or to the insurance companies. And back then, saying autism was like saying cancer. You just didn’t do it, even when the person met the criteria. It meant something hopeless. So they told my parents autism and then wrote down PDDNOS and when I got holder the diagnosis was changed to autistic disorder, which I did meet the criteria for. But previously there were other reasons for using another term for it and that’s pretty common. And autistic disorder is just the term for most of the sorts of autism that involve some sort of either delayed language or very unusual early language development, or loss of language, and I’d lost language and then redeveloped it in an unusual way. So that’s the category they stuck me in. Personally I think there are more useful sorts of categories and they haven’t even begun to explore those yet. But that’s just me.
Q. IS THERE ANYTHING THAT YOU WANT TO SAY THAT I HAVEN’T ASKED YOU OR THAT I’VE MISSED OR YOU THINK I MIGHT HAVE MISUNDERSTOOD?
AM: I guess I should also just say this straight out on its own in case you want the short version rather than the long version. And the short version’s only four words. My current diagnosis is autism. I also wanted to mention that among the parts of the disability rights movement, that I’m more interested in a lot of the time diagnosis isn’t the thing you talk about. What you talk about are what are the barriers in place that keep me from being able to do what I should be able to do. So for instance, the old style of fluorescent lighting is bad for a lot of autistic people. It’s also inaccessible to a lot of people with migraines, epilepsy, multiple sclerosis and a lot of other conditions that are affected by certain light frequencies or certain flicker rates in the light. So all those people would just say that fluorescent lighting is a barrier. And then there are staircases, which are actually for many people with Parkinson’s, they’re the opposite of a barrier. They’re the only way they could get around. And same for people with a lot of other movement disorders, where stairs would cue them into movement where ordinary ground wouldn’t. So they’re developing goggles that would project something like stairs in front of the person so they would be able to walk without assistance. But then stairs are a barrier to other people and it wouldn’t matter whether they have muscular dystrophy or chronic fatigue syndrome, they just wouldn’t be able to handle the stairs. And the issue is getting something in alternative to stairs, instead of here is my diagnosis medically and here is what it does to me. And I find that sort of thing a lot more interesting and a lot more what I am about than staying around putting people into specific diagnostic categories and mucking about in a medical way. And then there’s one other thing I wanted to mention. When you talked about parents wanting their children to be independent, anyone who thinks they are independent themselves is fooling themselves. Nobody is truly independent. Everyone is dependent on each other and many parts of the disability community are quite aware of that in ways that most people are not. And to us, the thing is why is it that some kinds of dependence are so invisible to people that they’re called independence where a lot of kinds are considered dependence and considered something awful for it. Why is it that I am not considered to live independently because I can’t cook for myself, but other people are considered to live independently if they can’t fix their computers.
Q. THERE ARE PARENTS OUT THERE WHO CAN’T COMMUNICATE WITH THEIR CHILDREN. CAN YOU GIVE ANY HOPE TO THOSE PARENTS WHO EITHER BELIEVE THEIR CHILDREN ARE INCAPABLE OF COMMUNICATING IN ANY WAY, OR WHO HAVEN’T FOUND THE RIGHT WAY, THAT THE SITUATION IN FACT IS NOT NECESSARILY - OR MAYBE NOT AT ALL - HOPELESS? BAGGS: There was a time when I was going to school and I still a lot of the day a fair amount of spoken language at the time but I couldn’t communicate some really basic things of importance to me, like that I was in pain sometimes even. That same year I started going there I had ended up in the emergency room having an impacted bowel (unclear) exceedingly painful way because I had not been able to communicate the extent of the blockage I was experiencing at the time. I have even had trouble like that in the last few years and I was going to the school with children who were said to not have any communication, whereas I was said to have lots but they often could communicate those basic things better than I could. And I find that contrast sort of interesting. I have met a lot of people who were said to have no ability to communicate. I have never once met a person who had no ability to communicate. I have, however, met a lot of people who had difficulty communicating in standard ways and I have met a lot of people who could communicate some things but not others. And those other things were very important to them. And I have been in situations where only someone who really knew me could understand what I was saying with my body language and other situations when I couldn’t say something but was assumed to be able to. So I’ve been on several different sides of the communication thing. And what I would say is a number of things. Exposure to a wide variety of autistic adults can be absolutely critical. I say this a lot because of how much it changed my own life and because autistic people are not all alike and it requires a wide variety before someone will really necessarily be able to communicate with someone else. But many autistic people can communicate better with each other and understand each other better. And you can end up in a situation where an autistic adult might be able to translate some really critical information from an autistic child who is not communicating in our standard form at all. It’s also been noted that a lot of our communication flies under the radar of non-autistic people. One study of very young non-verbal autistic children showed incredible flexibility in communication styles and only after many attempts had been made. And seemingly – nor did they throw what was then called a tantrum and it has to be understood that a lot of people try their best to communicate (unclear) that only certain things are communication, can make people unable to (unclear) communication when it’s going on. So it’s also important to learn sometimes right back from square one what a person’s different communication means. I know that reality is never simple and never easy when it comes to these things. I know that I have spent a lot of time with communication difficulties but I wish I knew the way around. But I know that there are so many different solutions. It hard to give a general answer. And another thing is to try every communication strategy you possibly can. A person can have trouble with language itself. They can have trouble with the production of speech. They can have trouble with the act of typing. They can have trouble understanding what the whole point of language is. They can have their own language which is extremely rich in detail but can be very metaphoric or very concrete and in both cases difficult for people to grasp until they’ve gotten used to it. There are so many different things but I don’t know how to list them all at once. But mostly I say keep trying. I know people who had no formal communication system until they were in their 30s, 40s and 50s. And now they have a means of communicating with people in language. Other people might never get accustomed enough to language to use standard language and might have to use something else. But whatever situation it is, people need to keep trying because all of us are not distinguishable from each other. You can’t tell by looking who will be able to talk, who will be able to type and so forth. And also remember that our time schedule is different. I hear a lot of people panicking that their 2 year old won’t ever talk. Most autistic people learn at the age of 3, 4, 5, even 7, sometimes 12. Sometimes even later than that. But most autistic people do learn at least some speech. And even when speech is available there have to be alternatives available because people like me exist who have the motor capability of speech but not the ability to consistently give speech any meaning and that sort of thing. There are just so many different ways to approach this. But I do have to say that it’s universal, that we are human beings, that we are real people with feelings and thoughts. Sometimes the thoughts aren’t the same as other people’s. Sometimes they don’t feel like thoughts but they still exist. And it’s only very rarely that we just have nothing to communicate at all. It’s not that we’re willfully turning away from people. Sometimes we have trouble doing it. Sometimes we’re too scared to do it but there are so many different ways to deal with communication of autistic people that I can’t possibly give answers to every single one. And also there’s a book by Dave Finksberger that I’d like to recommend. It’s called First Contact: Charting Inner Space and it deals with how to communicate with people whose developmental disabilities are considered so profound that they’re said to be in a, quote, unquote, vegetative state. And it talks about how he learned to communicate with other people who had those labels. And he says some important things in there. One of them is that when we’re dealing with someone with a profound developmental disability, you’re dealing with a linguistic minority of one, that a person might have 20 ways to say no and you have to try to learn every single one of them. He talks also about something where he says we need to get rid of the terms non-verbal and worse, non-communicative because they show our own limitations. They don’t show the limitations of the people being described.
Q. AUTISTIC PEOPLE ARE SOMETIMES DESCRIBED AS BEING “LOCKED IN THEIR OWN WORLD”: ANY THOUGHTS ABOUT THIS?
BAGGS: I’ve been trying to figure out this locked in our own world thing since I first heard the term. I was about 10 years old and I heard that term used to describe autistic people in a documentary about cats and that’s the only reason that I even heard the word. I didn’t understand what it meant and I took it very literally. I thought it meant that their body was here and their mind was literally seeing the landscape or Mars or Ganymede or something like that. And then I couldn’t understand why the people in the video were talking to people, because if they were seeing Mars or something then how could they possibly talk. And that’s one reason I had so much trouble believing it when people started calling me autistic. Because it was like, wait a minute, I may be strange but I’m not on Mars. And so I think I had a very autistic reaction to the term at first and I had no idea that at the same time some people were using the term “in my own world” to describe me because of the fact that I had very non-standard communication sometimes and would sit there while other people were talking and not seem too interactive or show interest in anyone in our standard way. Meanwhile I was puzzled why nobody ever talked to me. I could respond to contact but I’ve always had trouble initiating it and I keep hearing the term. I keep seeing it used to describe people and I can’t figure it out. I keep asking people what it means and I get answers that seem as nonsensical as the question. And the only thing I do know is that autistic people are supposedly at just perceiving the world around us directly without filtering that most people are. And if that is so, I don’t understand why they say we’re locked in our world when those filtering mechanisms seem very much like the best example I’ve ever heard (unclear) that might actually fit those words to actually only see parts of the world and then make up the rest of it in your head. And I deal so much with other people’s sort of cognitive hallucinations that have no room for me that I wonder at times whether it’s a case of projection or what.
Q. IS THERE ANYTHING ELSE YOU WOULD LIKE TO SAY ABOUT YOURSELF, ABOUT AUTISM?
BAGGS: Yeah, Bridging the Gaps by Jim Sinclair is something you really ought to read. There’s one thing where he talks about how far autistic people often have to come before we get to the point that most people consider the most basic and that most people will refuse to go back further than their most basic skills. And he says at one point: do you have to plug in your eyes in order to see? Do you have to plug in your ears in order to hear? Do you have to find your legs before you can walk? Are these normally skills that are acquired by conscious learning? And I find that statement really interesting because I have never been able in language developed by non-autistic people to convey these things in any other way that are negative of something else. I don’t know how to explain what my eyes see before I do what he calls plugging them in. I don’t know how to explain my sense of my body before I actually find it. I don’t know how to say those things in any terms other that here is what came even before that or here is what the lack of this particular thing looks like. But how I experience these things is not like I lack. I once described it in terms of there being this mountain that everyone lives on. Only they really believe they’re at the lowest elevation possible. And here I climb up from this valley and they can’t see the valley at first because to them it doesn’t exist. And then they look down into the valley and they can only see it from the top of their mountain and it looks like this barren place where nothing could possibly live. But when you are actually in this valley it looks very different. It’s very hospitable to life and there’s everything a person could possibly need in order to survive there. And that’s what I experience when I try to use your words to try to describe my experiences because the only words for (unclear) lacks of things. But the thing is before the standard way of looking, and I mean literally looking before the standard way of doing that. There are other steps before that. And if instead of climbing up to normal site I stay down at the level I start and, and this is a cognitive level, not just a visual level, it’s as much about thinking as it is about seeing and I’m getting all this information. I can put patterns together in ways that other people can’t. I can predict events other people can’t predict. I can notice things other people don’t notice. There’s this entire set of skills, that sort of life at this level, that are very real and very solid and very important. And yet if I try to explain this to someone they are only looking at it from down on top of their mountain and then all they see is this flat wasteland. And that’s not what’s down here and it’s very hard to even come up with the language to talk about what is down here because autistic didn’t people didn’t write the language. And I also want to mention that it isn’t just skills of course. It’s a combination of things other people can’t do and then doing things other people can do but through a totally different mechanism. And then being unable to do things other people can do. It’s a combination of all those things. It’ snot like it’s just one thing. And it’s also one reason that I really sometimes resent the term regression to describe my loss of certain abilities at certain times. Because for all I know, those losses were pat of gaining something else. And in that case how can it possibly be the same as growing backwards Everyone loses things as they grow up. Normal kids lose the ability to hear certain sounds that come in different languages than their own. If I lost that I lost it really late because my French teacher even commented I had to have been exposed to French or I wouldn’t have been able to identify and reproduce the sounds as accurately as I could. But I hadn’t been exposed to it. So I didn’t regress in that way, but it’s not considered regression if you do. It’s considered a normal part of language learning and while losing skills is possible and it’s not something I (unclear) as existing, it’s also possible that we just lose different skills in order to gain different skills sometimes. And that gets overlooked because the things we are losing are more valued and the things we are gaining are less valued, whereas normally when kids lose one thing to gain another, it’s considered progress. But for us when progress is in a different direction it’s considered the opposite of progress sometimes. And I don’t want that to sound really callous because I know how terrifying it can be to have an ability there and suddenly it’s not. But I just don’t always now think of it the same way I thought of it as it was happening.
Q. WHEN YOU WERE A CHILD GROWING UP, WERE YOU AWARE THAT COGNITIVELY AND IN TERMS OF PERCEPTION THAT YOU WERE “DIFFERENT”? AND DID YOUR PARENTS SEE THIS?
BAGGS: My parents saw me as different. Everyone always told me I was different and I mean everyone. It’s like if I managed to ask anyone why people give me a hard time, they say because you’re different. And it’s like what exactly is different then? I didn’t know what was different about me. Sometimes noticed it in some terms but it was always very negative terms. I was classified as gifted as a child but I really thought of myself as a very slow learner because so many things the other kids did naturally I couldn’t do at all. I would be in my advanced reading class and struggling to understand any of the words the teacher was saying and not even knowing that I couldn’t understand them and just sort of running by guesswork and that sort of thing. And I didn’t know that was not what I had to do or something. I didn’t know what was missing but I felt like something was because I compared myself to the usual people around me and saw that there was so much I didn’t understand, that everyone else did. And that was my experience of myself. I thought of myself as vastly inferior to other people if I thought of it at all. And being good at a few things didn’t change that for me. Also I knew that I overloaded a lot and other kids never seemed to. I knew that. If I read about interaction in a book it seemed so smooth. But if I inserted myself into it it always went wrong. I really experienced language in a very strange way and I never realized how strange until I grew up. And a lot of things I only half noticed because I didn’t know what normal was supposed to be, but other things stood out to me very badly. I remember meeting a girl in fourth grade who almost certainly was also autistic and she was so terrifying to me. I almost hated her because I could hear my own voice in her voice and I could see my own weakness. I thought it was in her inability to handle overload and she cried a lot of the time like I did. And she had an unmodulated voice like I did. And so much was the same that people often said our names together like we had something in common and that sort of thing I kind of noticed. But I already hated myself so badly that I hated her too, which is a horrible thing to say but it’s just how it twisted up a person gets if they don’t know what’s going on. Also I do remember shut down was a terrifying secret to me. And after a while I experienced like all the things my body had to do, like all the odd motions and stuff that are natural to my body. I tried to hide them. I thought I was addicted to them because it was the only model I had for that kind of experience was that I couldn’t give this up. So it must be like an addiction.