We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords.
The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, and Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate.” Stay tuned for two more autism parent posts: One from a neurotypical perspective, and one from an Autistic perspective.
You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue.
Today’s post is by self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else.
This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people, their disability is ego-syntonic (integrated with their self-image).
Ego-dystonic is an psych term for an aspect of a person that doesn’t fit their self-image. For example, if someone lost their legs in an accident, they would probably wake up the next day and see a body that didn’t seem to them like their real body. On the other hand, if someone is born without legs their disability is usually ego-syntonic, so they feel as attached to their body as anyone else. They don’t feel the same distress that the first person might.
It’s hard for anyone to put themselves so completely in another person’s shoes that they can relate to not only their day-to-day experiences but what it would be like to be attached to those experiences because they are yours. Also, we don’t live in a society that encourages non-disabled people to understand this.
One symptom of this problem is disability simulations. The conventional disability simulation consists of a person who can walk trying to get around in a wheelchair, or a person who can see wearing a blindfold. These simulations are criticized because they don’t really simulate disability. A person can come away with a feeling like, “It would be horrible to be blind,” because as someone who is used to being sighted, they found blindness to be much more scary, overwhelming, and unnatural than an actual blind person does. An hourlong disability doesn’t resemble a real disability any more than the lack of disability does.
I think you can see the same issue in mainstream fiction, written mostly by non-disabled people, that features disabled characters. Disabled fictional characters often seem to have an acquired disability, a fairly recent one. They remember being non-disabled, and it’s taken as a given that a non-disabled version of them is their “real” self, and they want to be that person again. The most obvious example I can think of is the movie Avatar, in which a guy finds it less ego-dystonic to be a ten-foot-tall blue alien than to be paraplegic.
When I say this is not a realistic portrayal of how most people feel about their disabilities, I’m not trying to claim that being disabled is super fun or that it wouldn’t objectively be easier to be non-disabled (that’s the definition of disability). But I am trying to say that disability feels very different to disabled and non-disabled people.
Obviously many non-disabled people don’t have the same kind of distress reaction to disability that I’m describing, and some disabled people do. But I think it’s a significant enough trend that it amounts to a kind of culture shock.
Many non-disabled people who are having kids have formed not only a personal self-image that is non-disabled, but a family self-image that doesn’t contain any disabled kids. Then if they have a kid who is disabled, they feel that they lost something.
When you think about it, this means the kid is growing up in a situation where they and their parents are having a massively different experience of the kid’s life. To the parent, certain facts about the kid’s life equal a loss, but from the kid’s perspective nothing has been lost and these are just facts.
This difference in perspective can lead to some practical problems. Kids tend to be shortsighted. If a kid really loves sitting around making moaning noises, probably their entire thought process about this is, “I found something fun to do. Awesome.”
A parent by definition is thinking something more complicated. “I’m glad that my kid has such an easy way to get into a good mood. But, no one in our house can even read a book because this is so loud, and I’m also worried that my kid isn’t putting much time into learning to do new things.”
Or the kid is having trouble learning to read, gets stressed, and decides it would be better to watch movies instead. Whereas the parent knows that learning to read is important, and shouldn’t be given up so quickly just because it seems hard.
There has to be this difference in perspective between parents and kids — whether or not the kid is disabled — because it’s normal for parents to be pushing their kids to learn and do new things. Ideally, as the kid grows up they will come closer to the parent’s perspective, and become an adult who’s motivated to not just go for instant gratification but to attempt new and challenging things.
The problem is that when a parent is experiencing a kid’s disability as a loss, the gap between the kid’s and the parent’s perspective can get so huge as to be insurmountable. If a kid’s moaning is heartbreaking to the parent because it’s a sign of disability, and the kid thinks moaning is the coolest thing ever, these are two people who have almost nothing in common.
The kid’s behavior feels like an attack to the parent. Doesn’t the kid understand that learning to read would be a way of moving away from this really bad fact of being disabled, which has caused everyone so much sadness? The parent’s behavior feels like an attack to the kid. If the parent is so personally hurt by the kid trying to do something they love, does that mean they don’t care if the kid is happy?
In this situation, there is a built-in distance and I think the distance can get bigger the closer the parent and child are. If the parent is attentive enough that they know every single thing that is challenging or different about the child’s life, and every one of those things cuts like a knife … well, I don’t exactly know how to put this into words, but for me it’s like the closer my parents get to the details of my experience, the less me there is, if you know what I mean. They start giving off a sadness that isn’t how I feel, but is so bottomless that it has the effect of terrifying and overwhelming my actual feelings, which are not that existential.
I often feel like the best way to keep my parents on the same page emotionally as I am is to keep things from them. Actually now that I write this down it sounds really stupid and dangerous, but I guess my reasoning process is that I am always a little worried about myself, and if my parents don’t know much about what’s going on, they are a little worried about me too. That keeps us all the same and we can relate to each other. If they found out some of the things I’m worried about, they would be ten times as worried as I am, and maybe this is true of most parents regardless of anyone’s disability status. But it is something I think about when people talk about being their kid’s voice.
When I was a kid, I liked to sneak around my parents’ room and read all their books about kids. Some of them were about kids in general and some were about kids with autism and learning disabilities. One had a title that I think was supposed to be encouraging: “How Your Child *IS* Smart.” My parents didn’t really like me reading these books so I had to keep it on the down low, but when I was thirteen I discovered a book about Indigo Children. I couldn’t help but ask them why they had it.
My dad looked at me and said really solemnly, “We’ll try anything to help you.”
Soon after, I had an experience that I remember really well. Our dog died, and the next day my parents and I went out to dinner. When we got home and were getting out of the car, I got hit with an almost physical guilt about being an only child. Now that the dog was gone, there were no extra parts in the family unit that could distract my parents from what was wrong with me. It seemed so horrible, just them, me, and the Sadness.
As I got older I started to resent what my dad had said about the Indigo Children book. “We’ll try anything to help” — what was I, a serial murderer? I was just a kid who people didn’t much like having around. This was most viciously obvious when I was at school, and I was the one who had to be there, not my parents I felt like if anyone had the right to be desperately concerned about the situation, it was me. But I wasn’t as concerned as they were.
I recently asked my dad why he said that, and it turned out that he doesn’t think I am a serial murderer, but was just try to say something positive. A psychologist had actually advised my dad that this was the right thing to say if I asked why my parents had so many books or why I went to so many doctors. Which is actually where I’m going with whatever section of the post this is.
It might seem like saying “we’ll do anything to help you” or “we tried everything” would make a kid feel like you really adore them, but this can actually make someone feel horrible. If you’ve always been disabled, disability doesn’t really feel like an emergency, nor does it really feel separable from who you are. So it can just feel like, if someone would be desperate enough to try everything you must be sort of a disaster as a human.
I really love this interview with Norman Kunc, an advocate who has cerebral palsy: www.normemma.com/articles/arstairs.htm He’s thirty years older than me, but when he talks about how his childhood made him “declare war on his own body,” that couldn’t be more familiar. I don’t have a mobility disability, but autism can also live pretty unmistakably in the body, which is why I used to only want to meet people when I was sitting down.
Kunc came to this big realization when he was in university: “I had the right to be disabled.” This line has stuck in my head, both because I find it incredibly moving and because I know that a lot of people would find it about as bizarre as saying, “I have the right to have a headache.” Wow, great, a headache! Where can I sign up?
But I already am disabled, so it is a right I want. If I don’t have the right to be disabled, it means I have to function like I’m not disabled which I can’t do. Or I have to try to function like I’m not disabled to the greatest extent of my powers, but that isn’t what I want to put all my life force into. I want to be disabled because then I can have a real life.
I feel really nervous when I hear that a kid with autism has “lost the diagnosis” because they stopped having stereotypical traits of autism that people could see. Because to me it means that the kid has done and is continuing to do all this work, but they’ve lost the word that would explain that they’re doing a lot of work. Instead they’re just a normal kid who is really tired and sometimes has to keep this secret stash of movement and feeling because it doesn’t fit the person they’re supposed to be.
To get back to the culture shock I was talking about, I think that some non-disabled people don’t understand disabled people having these kinds of feelings, because it’s hard to understand that disability is sort of in us, and not just something that happens. Which to make my way back around to my point is why someone might think it is comforting to tell a disabled kid, “We’ll try anything to help you,” but actually make the kid feel like some kind of natural disaster.
It also explains why some other “nice things to say to a disabled person” get lost in translation — for example, “No, you’re so smart!” if a disabled person describes a problem, or the classic, “You’re not really disabled, you just have trouble with [area of impairment].” Or when I say I’m disabled and the person says, “Aww! Don’t put yourself down!”
My idea isn’t to chew out people who use these phrases because I know it is meant nicely on their end, but I wish they would stop. I want to be disabled, or at least, since I am disabled, I want to be.
Because disability seems so familiar and, well, basically, good to me, sometimes I don’t feel comfortable with efforts to get rid of disabilities. I don’t want to say I am anti-cure, but I wouldn’t want to live there. I know a lot of awesome people with disabilities, and if they didn’t have disabilities their life experiences and personalities would be different. They might still be an awesome person, but not the same particular one.
I don’t suppose a cured kid would be upset about being different from how they would have been, because that version of them never existed. It’s just as biased for me to want some people to have disabilities as it is to think that no one should have disabilities. I don’t think that it is perverse for me to feel the way I do, though, but I know some non-disabled people think it is perverse.
Kassiane’s post had to be posted a day early because I took too long to finish thinking about this. Do you think it’s just an interesting exercise, or might some of these ideas begin to explain a problem you’ve had with someone of a different disability status?