Progressive Coercion

There's a pattern I've noticed recently. People, especially parents or service providers, decide that a certain way of treating disabled people is wrong. They speak out about it. And generally that's a good thing. But then it somehow turns into yet another set of rules of behavior that disabled people are coerced into, even if they resist it.
An example: Awhile ago, some people started saying that treating developmentally disabled people, especially adolescents and adults, as if they're much younger than they are (in aspects that aren't necessary for proper care - ie not including things like changing diapers) is not a good thing. Many developmentally disabled people would agree with this. But somehow, for many service providers and parents, they interpreted this to mean that developmentally disabled people should not be allowed to act in ways considered typical of a much younger child. This led to things such as actively trying to discourage adolescents and adults from playing with dolls or other 'immature' interests and play. And that, like pressuring them to act younger, is oppressive.
Another example: David Hingsburger, in his video The Ethics of Touch, said you shouldn't go around hugging developmentally disabled people that you work with. Which I agree with. But then, in reply to a question about the developmentally disabled people who often initiate hugs, he described a method for training them out of that. Because somehow, they're not allowed to want touch beyond what most people their age do. (My policy is to go by mutual comfort. If they seem to want the touch, and I'm okay with it, then it's fine. This means they either expressly consent to the touch or initiate it. For example, I hug back if they hug me, and sometimes I ask children if I can pick them up and twirl them around.)
The biggest problem with this pattern, in my opinion, is that the focus is still on how the disabled person should behave, what the disabled person should do. And it's still being dictated by nondisabled people. They challenge some specific problem, while ignoring the power dynamic of helper and helped, the controlling others 'for their own good' rather than letting them have freewill and choice. The power dynamic, and the focus on the disabled person as the problem, remains unchanged, meanwhile they get to act like they're all progressive and liberal and helping the cause of disability rights.

What Was She Thinking?

Many people lately have been talking about Hannah Poling, an autistic girl with a mitochondrial disorder whose parents have received compensation because she regressed after vaccination at 19 months. I was thinking of blogging about how mitochondrial disorders are extremely rare, how the vaccinations she received were much better than getting one of the illnesses they were intended to prevent, and how simple measures such as reducing fever, ensuring that the child eats plenty even when sick, and spacing out vaccines (she got 9 at the same time) could prevent other children with mitochondrial disorders reacting badly to vaccines.
But after watching the videos, I've thought of something else. I watched this 9 year old girl sitting there, between her parents, as they talked about the vaccines she got and how they affected her. I heard her parent describe all the ABA treatment she got. I saw the pained look on her mother's face, the 'protective mother of a hurt child' body language she gave out. I saw a girl who seemed a lot like me and many children I know. I saw a girl who talked with her mother about the picture she was drawing, was bothered by some kind of microphone or something that she was wearing on CNN, and had movement quirks typical of autistics, more prominent but similar to my own movement quirks.
My big question is: What was she thinking? How did she feel? What was it like for her, to hear her parents describe her 'descent' into autism, to be a silent observer to her parents complaining about her behavior and expressing their pain?
And then I think about the broader context. She received ABA, so I think about her sitting at the table, putting up with (or protesting) someone giving her an unending series of commands. She lives with these parents every day, so I think about what that means. She probably hears them explain her problems to doctors and teachers and maybe even strangers. And how do they react when she acts strange? If she expresses an unusual desire, like the boy who wanted to dress up as a lamppost for Halloween? They're clearly quite loving, especially her mother, but they've spoken publicly about her being damaged, with a lot of pain evident. Do they express this in their everyday lives, or are they more like the mother of an autistic boy who told my father 'this is as good as it gets' and apologised for him not being a typical birthday guest, but was really only putting up a defense because she didn't realise we were so accepting?
So, my blog entry, rather than being a bunch of facts, is really more a bunch of questions, about the person most centrally involved in this case, but whose viewpoint has been considered the least. What is it like to be Hannah Poling? What was she thinking while CNN videotaped her?

It's Become Personal

When I first got involved in autistic rights, it was mostly an intellectual feeling of wrongness. I suspected I was autistic, and later knew for sure, but it didn't personally affect me much. Most of the contact I have with overtly anti-autism people is generally a) on the Internet, and b) initiated by me (I have plenty of contact with people who have no clue about autism, but are generally willing to take my word for it, though). The few overtly anti-autism people I've met since leaving school in grade 7 I am usually fairly able to defend myself against. They aren't that big a problem for me.
So at first, I was arguing on intellectual grounds, with little emotion. Not to say that I didn't care, I did, but in an intellectual way. The autistic people I advocated for were abstract to me.
But then I started volunteering with disabled kids. First, I participated in an ABA gymnastics program, with autistic kids and neurotypical kids. But ABA tends to keep you distant from the kids. Next, I volunteered with a program helping autistic kids train their own dogs, as assistance animals. But that didn't last long. Recently, however, I've been volunteering with a variety of disabled kids (though the program coordinator prefers to pair me with autistics) in a physical activity program.
In volunteering, I've met autistic kids. I've also seen the harm people do to them with good intentions. The worst example was twins with separation anxiety in the ABA program whose mother was used as a 'reward' (really, it was temporarily stopping a punishment). Another example, that I actually did more to help, was an autistic boy being gently restrained and redirected for hand-flapping. I certainly convinced them not to require me to do that, and I think I probably convinced them not to do it either by example.
The thing is, now it's not so intellectual. Now, I read things written by a parent of an autistic kid and imagine the parents of the kids I've met saying that. I read about murder of autistic kids and instead of just seeing a wrong, I see a child who died. I read stuff by professionals working with autistics and see the children they work with being treated in the way they advise. One professional said, in a book I read, that 'being teased is what happens when you act weird' and I imagined a young autistic bully victim hearing and believing that. (She actually said this to an autistic boy.) I read stuff by autistics who hate autism and my heart cries out with the thought that the kids I know may feel the same way.
It's still intellectual, because I still have reasoned arguments and logical conclusions. But now, it's also emotional. I realize more that real people are being actively hurt by these attitudes, and I feel intense empathy for them. To those who say 'spend time with an autistic child and their family and you will see how terrible autism is' - I have spent time with them. And rather than seeing a terrible disability, I see a terrible society.

People Like Me Are...

I found an interesting quote today:

"As I got a little older, I saw people who moved and sounded familiar, like me in some fundamental way that other people were not. Inevitably they were being walked around in a line by staff, and coming from the nearby state institution or some of the group homes in the area. I found this ominous.
Part of the reason I ended up in institutions to begin with was my terror of ending up in one and my knowledge that given the way things seemed to work it must be inevitable sooner or later. There just were not people like me on the outside. And as the shifts of adolescence came around, what a person-like-me was, was unmasked to other people in more ways than one."
http://ballastexistenz.autistics.org/?p=218

I've read that particular article before, but this time, this phrase really jumped out at me on a personal level.
I have a young autistic friend. He's considered severely disabled. For the first little while, he acted fascinated and delighted at me acting autistic (he's kind of gotten used to it by now). I thought at first it was just finding 'someone like him' or 'an adult like him' (although I don't think of myself as an adult, he probably does). But he definitely has contact with lots of other autistics, including in the very same setting I met him in. He may have met other autistic adult, I wouldn't be surprised if he has.
I wonder if what really fascinated him about me was that I was someone like him on the 'other side' of the helper/helped hierarchy that he is constantly experiencing (as one being helped). I suspect all the other autistics he's met have all been on the same side of that hierarchy as he is, all other recipients of similar kinds of help as he receives. Which means it might be that he was surprised that autistics can be helpers as well as the helped.
I can't know for sure if that's what he's thinking, of course. But it gives me another way of looking at him. He's the kind of person most people assume is unable to perceive or react to discrimination and hierarchies on this kind of conceptual level, but then, so is Amanda Baggs, and she wrote that article.
Ettina

Who Can Speak for the Spectrum

Very often when an autistic person makes some statement about autism (contradicting what the autism establishment wants to believe) they are told that they 'don't speak for' X category of autistics. I would give a qualified agreement to that.
I know my own mind. I also know the behavior of people I interact with and what they say about themselves or the behavior of other people. I can make inferences from statements and behaviors about another person, but I am not capable of reading their mind. I can't know for certain if my inferences are correct, or if other people's statements are correct. I know intimately what my particular kind of autistic mind is like, but I don't know anyone else's mind, except what they tell me or I infer from their behavior, which is not infalible.
The same applies to everyone else. If you've decided somehow you know what someone else's mind is truly like, then without knowing any more information I can say you are wrong. You know what you observe or what they say. What they say may or may not be accurate, your interpretation of their behavior may or may not be accurate.
My inferences about other people, though fallible, can be useful. I infer from my autistic friend's smiling and flapping and tensing that he is excited, when I ask if he is he replies 'oui' (yes), so I assume he is excited at those times. I don't know that, the way I know if I'm excited or if he's flapping his hands or said yes when I asked if he was excited, but the assumption has so far been verified. People do this all the time - make inferences about other people's mental states from their behavior and what they communicate about their own mental state.
A complicating factor is differences in behavior patterns, mental states and the relationship between them in people with different kinds of minds. Every person is unique in these factors, but everyone has more in common with some people than other people. Some of the statistical outliers have been grouped into various diagnostic groups such as LD, ADHD, autism, OCD, etc, etc, based mostly on behavior with some diagnoses including self-report of mental states (eg OCD obsessions can only be determined by self-report). If these diagnostic categories have any validity at all, they indicate the individuals within one category have more in common, in some aspects, with each other than the general population. This is true even for broad categories like autism. I wrote a post awhile ago about this, called It Really is One Syndrome (scroll down a bit).
Considering all this, a person from a particular diagnostic group who provides information about their internal mental experience and their inferences about what aspects of this may be characteristic of that diagnostic group doesn't represent everyone within that group. But someone who only has observation of behavior or physical measurements to report, without any personal experience as an individual in that diagnostic group, is even less able to represent that diagnostic group. This latter group includes the vast majority of parents and professionals.
In addition, a person's opinion on controversial issues relating to that diagnostic group does not necessarily indicate how useful their statements about that group really are. We must not have the double-standard of accepting what certain people say about a diagnostic group while rejecting other people's statements on grounds that also would, if applied equally to all, reject those we accept. For example, it makes no sense to accept what Temple Grandin says about autism while rejecting what, to choose a random example, Frank Klein says, on the grounds that he is high functiopning and doesn't know what it's like to be low functioning autistic. Both of them are verbal autistics living independendantly and fairly successfully who had a history of speech delay and have, from early childhood, shown significant autistic behavior which continues into adulthood.
[Edit: Is anyone actually reading my blog? The past several posts have had no comments left on them.]

Is Autism an Invisible Disability?

It's said that autism is an 'invisible disability' because there isn't a distinctive autistic facial appearance, or some easily noticeable aid every (or most) autistics use, or whatever. However, it isn't always.
Firstly, some autistics present as very noticeably odd. Most people can probably tell someone is disabled if they are visibly stimming, have odd movement patterns and do not speak (with the exception of young children). Especially if, like many people who present that way, they have someone with them who is acting very patronizing and staff-like towards them. Some people describe this as 'looking retarded' which is probably what most people tend to think about someone who presents this way. If they can speak, but are doing so oddly, they may be considered retarded or 'crazy'.
Secondly, syndromal autism can be visible in the same way any syndrome is. Many conditions can cause both autism and a distinctive, unusual appearance. Some syndromes cause an appearance that isn't visibly odd, others cause one that is. I have a friend with a kind of syndromal autism, who has an unusual appearance and also walks oddly because of scoliosis and other motor issues. I think he's hypotonic, haven't been told this but he moves like a hypotonic person. Anyway, all those make it that, even if he acted fairly NT (which he doesn't) people would know he wasn't normal.
Lastly, if you know plenty of autistics, you can spot it even in 'mildly autistic' people. When I look at pictures taken of me when I didn't know my dad was taking a picture of me, my autistic mannerisms are fairly visible. The most obvious one, to me, is holding your arms up near your chest. CP people do this too, but it's different with CP - more stiff (I can recognize CP pretty well too). I just find that if I'm not thinking about my posture, very often my hands will be up near my upper body. This is only one example, there are others. It's like recognizing a person from a certain culture by their mannerisms (something I can't do, but lots of people I know can with cultures they are familiar with). My dad has noticed, for example, that Cree people sometimes point with their mouths.

Sirens and Autistic Siblings

I read an article called Sweet Surrender by a parent of an autistic boy who compared neurodiversity activists to 'sirens' urging people to give up fighting for their children. I tried to reply, but something was going wrong with my account so I couldn't.

I personally know several autistic people who have serious difficulties with communication and self care. One boy I know communicates mostly by pointing and grunting, sometimes using a picture communication device and sometimes signing a few words and very occasionally saying words like his name. A girl I know runs around saying words and phrases which are only loosely meaningful and she runs into trees and people because of motor planning problems. I take this girl swimming and she can lift her arm and leg and sometimes pull her pants down but otherwise can't dress or undress herself. I also worked with another girl who in reaction to a change in routine, started screaming and banging her head and when I tried to stop her from hurting herself she bit me very hard. All three of these people are on the autistic spectrum.And all three are wonderful, unique people. If I could cure them of their disabilities with no side effects, I wouldn't, because they wouldn't be the same people.I'd like people to stop equating the kinds of needs and problems people like my friends have with being defective people who need to be fixed. And it's not that they have some special talents. If they have such talents, they are not very easy to observe. But all of them are special people with their own kind of beauty.I am in favor of helping these people. The girl who bit me lives in a foster home with at least three other disabled kids who need a lot of attention themselves, and her foster mother is very overworked and stressed. She doesn't seem to have enough support to care for the children in her home. Also, I would love for them to be able to communicate more. If that girl could've said 'we need to use the other dressing room, I'm not used to this one' she'd have been less likely to hurt herself or me. The other two aren't aggressive or self-injurious, but they understand a lot more than they can express and it must be frustrating to be unable to tell us what they're thinking, especially when they need something.Also, I don't see how it's any easier to accept your child than try to cure them. I used to think there was a big difference between mildly autistic people and severely disabled people, and that of course we don't want severely disabled people. When I challenged that and became more accepting of severely disabled people, it became painful to read discriminatory things that I used to be fine with. A parent who decides their child needs to be accepted for who they are will find it harder to deal with the well-meaning people who want to change their child. Also, what supports there are for disabled people often come in packages that require people to deal with a lot of discrimination. Besides, it is hard to accept that you have been discriminatory, especially if it has hurt someone you care about. If you are disabled, accepting yourself makes it easier, but if you can blind yourself to discrimination and have it not hurt you, that is easier than fighting it.

Also, my Mom found a New York Times article called Her Autistic Brothers, about a 14 year old with autistic twin 16 year old brothers. A lot of the article is pretty good, but there's some parts I don't like:

"Because of the particular challenges of autism, siblings of children with the disorder tend to have a harder time than siblings of children with other sorts of special needs: they enjoy fewer positive exchanges with their brothers or sisters and show more behavior problems themselves. Fewer positive interactions might simply follow from the fact that the disorders on the autism spectrum are characterized by social deficits — from difficulty with eye contact and absence of reciprocity on the milder end to total lack of speech in severe cases. But it has also been shown that typically developing children have trouble forming a concept of autism, which may itself have an impact on the way they relate to their siblings."

Firstly, it's far worse to be a sibling of a kid with rages. I've been a foster sibling to two kids with psychological issues who both had rages, and the effect is similar to being a child living with spousal abuse. Even if they don't mean it and you know they don't, it's hard to deal with someone who is screaming insults and maybe even physically attacking someone.
Secondly, autism doesn't cause social deficits, but rather social differences. Autistics tend to need more alone time and have an odd pattern of interacting. If those are dealt with well, an NT sibling can have plenty of good interactions with an autistic child.
In general, I think this article doesn't address the issue of how the family deals with the disability. I can certainly see how it would be hard to be the NT daughter of Alison Tepper-Singer (in the Autism Every Day video) and her kind are far more common in the autism community than other disability communities. I bet it's much easier to deal with a disabled sibling if you are told they have 'different genes, same value' (a slogan I saw on many advertisements by the Canadian Down Syndrome Society) than if you are told it's a living hell to have to deal with someone like your brother or sister. And it's not just the (very real) differences between autistic kids and Down Syndrome kids. I've seen it in families with children with rare chromosome anomalies. If the condition is associated with autism but the behaviors aren't recognized as autistic, they seem to be more accepting than if they know the condition is associated with autism. I think it's that the culture of the mainstream autism community is so vicious that if you buy into what they say, it makes it much harder to cope.
In terms of forming a concept of autism, I saw an excellent book called All Cats Have Asperger Syndrome. It describes Asperger Syndrome with pictures of cats on each page. For kids who are familiar with cats, that kind of book seems like it would be a great help. But it seems to me that if you simply explain to the kid why their sibling is acting oddly in numerous 'teachable moments', they could easily get a pretty good understanding of autism.

"In the car, they demanded that their mother make only right turns — left turns or driving in reverse would provoke screaming fits. “We were complete prisoners,” Jennifer says. “We couldn’t go anywhere.” She remembers one time, after the boys tore up the house yet again, that she just sat down on the living room floor and sobbed, with Tarah by her side."

This is an example of the problem. I can't think of anyone among the people I've known whose kids have chromosome anomalies with an unrecognized association with autism who described themselves as prisoners of their children. This seems to be something about the autism community. It almost makes me feel like I should avoid telling these parents what their child has in common with autistic kids, but I hope if I tell them the right way they'll find the better part of the autism community - the part that is dominated by autistics themselves, and some parents, especially autistics with autistic kids.

Recovering Racist

I've been rereading a book of mine, called White Girl. It's by Sylvia Olsen. In this book, a girl named Josie is living with her single mother. Both are white, and like many white people, don't think much about race. Then Josie's mother falls in love with Martin, an Indian (as he calls himself) from the nearby reservation. They get married and Josie and her mother move in with Martin. Josie, as the only white kid on the reservation, comes to understand a lot about race that she'd never thought about before.
One scene made me think. In this scene, Josie's Mom is talking to Josie's grandmother Mavis about her plans to marry Martin.

Mom had argued with Mavis about Indians on the phone, two weeks before the wedding. Mavis obviously had told Mom you couldn't mix oil and water. I imagined her voice: "It'll never work. And furthermore, you should think about Josie. The Indian reserve is no place for her."
"You're prejudiced," hollored Mom.
Of course Mavis must have denied it.
"What do you think?" Mom said in a controlled voice. "You think Indians are slinking around the corners of the reserve waiting to pounce on a little white girl?" (How was that for irony?)
I didn't hear Mavis's response, but it was what Mom said next that made me understand the trouble she was in now.
"Anyway, Mom," she had said, "Martin isn't wild and stupid and drunk like all the other Indians. He's different."

(The irony was that when Josie's new friend Rose asked Josie's Mom if they could go for a walk around the reserve, Josie's Mom was afraid of the same thing she accused Mavis of fearing.)
I thought about the irony of a racist calling another racist prejudiced. I realized that it's far more common for people to point out other people's prejudice than their own. Partly it may be that it's modeled more. It also may be that people simply don't realize they have a certain prejudiced view until they stop having it, that looking at your own prejudices makes them collapse.
I was thinking it would be good if people talked more about how to recognize when you are being discriminatory and change your own viewpoint and behavior. I once read about a group called Recovering Racists, who wear buttons announcing that they are Recovering Racists. Apparently this tends to get a lot of comments from non-white people.
Thinking about them, I decided to examine if I've been discriminatory towards disabled people recently. An example popped into my mind.
I volunteer with an activity program for disabled kids. It just ended for Christmas, but I'm planning to sign up again when it starts in spring. One boy in the program has severe CP, and can't sit up without help. He can't talk, but moans sometimes. I have repeatedly underestimated how much he understands, automatically slipping into viewing him as a 'vegetable'. I was surprised in the summer program when I overheard his mother saying he woke up really early on the first day because he knew this program was starting and was so excited, since I hadn't realized he enjoyed the program since he seemed unable to participate much. Just recently, on the last day of the fall program, he was moaning and the program coordinater commented that he was sad that it was ending. All the other kids were having fun, not thinking ahead to the fact that this was the last day, but this boy anticipated that he wouldn't be coming there next week and was upset. I need to learn to recognize that just because someone can't move much or talk doesn't mean they aren't aware.

Individualism and the Two Disability Stereotypes

I think there are two main disability stereotypes, which I call the able-disabled and unable-disabled. The able-disabled is the person who despite their disability, can do X, Y and Z, who overcomes their disability to do those things, while the unable-disabled can't do those things and lives a miserable, limited or otherwise pitiful life. Our society has a tendency to split people up this way.
When I try to think of examples, I think of specific people for the able-disabled stereotype - Hellen Keller, for example. When I think of examples for the second stereotype, I think of generic groups - low functioning autistic, for example. Why is this?
I think society, when looking at people viewed as able-disabled, view them as unique and special individuals, who have individual qualities responsible for their success. They are the exceptions. Some say these special qualities are modifiable, others don't, but in any case this person is special, and not just as a euphemism for disabled.
However, even if they describe a specific person for the unable-disabled stereotype, the person is not viewed as individual but as representing a group. They are an example rather than an exception. So the person themselves is not considered important, rather they represent a group of people. Also, the focus is mostly on their disability, and if they mention personal qualities thought to be separate from the disability, it is in terms that suggest shades of the able-disabled portrayal (since the same individual is often described in both ways).
An example of this shift is with many parent descriptions of disabled children. I often wondered why certain behavioral traits were in among the various health problems and such whereas others were at the end. The reason is that they are viewed as problems due to the disability, or as positive traits despite the disability. Here's the typical format:

My child has X. I thought things were fine until [xe regressed/xe was born not breathing, or funny looking, or whatever/xe was X age and not doing Y] Currently, xe has T, U, V, W, X, Y and Z. All that makes it sound really bad, but xe [is a wonderful, happy person/can do X, Y, Z/has taught me so much/has greatly enriched my life].

Basically, it starts out describing the child with the unable-disabled format (which is the basic format for describing disability) then at the "All that makes it sound really bad, but" they switch to the able-disabled format. The specific order may vary, but it's remarkably similar. Parents often don't consider the able-disabled exceptions as such, but as exceptional, relative to most people (which is often described as rubbing off on siblings, parents (though they'll often give examples of why they're not perfect) or other people who know their child.
In that framework, it seems to me that often person-first language is intending to encourage an able-disabled view of disabled people, where the disability is peripheral. But why can't the disability be central without viewing the person as pitiful? For example, why split up behavioral traits into bad, disability related things and good, individual qualities?
When I look at behavioral traits, I often forget about good or bad and just accept what is without value judgements. I don't wonder if the hyperactivity of the Rett girl I work with is good or bad, or assume it is bad, but just think of it as a trait I have to plan for and react to (for example, by recognizing that being with her is tiring and not planning for strenuous things right afterwards).
Ettina

"Confined to a Wheelchair"

Many physically disabled people have complained about the phrase 'confined to a wheelchair', saying that their wheelchair is not confining, it is freeing. I accept that it's true for them. But it's not true for everyone in a wheelchair.
I've been volunteering with disabled kids. One kid I met while volunteering was this girl who's very delayed, possibly physically disabled as well. She has a wheelchair. I think it's accurate to think of her as confined to a wheelchair, the same way an 8 month old is confined to a stroller. That's because, like most 8 month olds, she can crawl really fast. However, she can't push her wheelchair independently.
Therefore, she has more freedom of mobility outside of her wheelchair. Her wheelchair is confining.

Opinion Shifts and Social Barriers

I read an article by the younger brother of a man, Chad, who has isodicentric chromosome 15. It's no longer available on the internet, but I have a printout. Towards the end he says that despite how wonderful Chad is and how much of that is because he's disabled, he'd never wish Chad's condition on another person.
This reminds me of my opinion on PKU. As I learnt more about untreated PKU, I realized just how valuable these people are. But still I didn't think people should feed PKU babies phenylalanine. I have since asked myself why, and now I am 'pro-choice' on the matter. I want people to be able to choose freely whether to give their PKU baby phenylalanine, instead of the automatic and societally enforced choice being 'no'.
While volunteering with autistic kids, I met a number of parents who seemed to instinctively view their child(ren) as fundamentally different and valuable in a unique way, while still saying that autistic kids should be cured and not thinking of it as destroying who their children were.
It seems to me that oftentimes, people who, through no choice of their own, ended up with a disabled family member reach some degree of acceptance (which is necessary for them to ever be happy again) but they stop at the point where fundamental assumptions would be challenged. They accept that their relative with an incurable disability is valuable and that the disability has benefits and isn't all bad, but don't challenge the idea that disabled people should be prevented.
The medical literature says that parents of disabled people have 'chronic sorrow', so that while they can reach some degree of acceptance of the disability, they are never able to completely move on because their child is a living reminder of their grief. Birthdays, seeing a normal child that reminds them of how their child might have been, all sorts of things open up the mourning again. It's like a wound that closes over but never heals.
However, I doubt the anti-cure parents of autistics, such as Kathleen Seidel, feel 'chronic sorrow' about their children being autistic. And I know for a fact that many Deaf people with Deaf children don't feel any grief at all about their children being deaf - in fact some mourn having a hearing child. It seems to me that 'chronic sorrow' only occurs if you have not completely accepted the disability, but simply found a way to live with something you still consider a bad thing. If you let go completely of your longing for a normal child, or never have that longing in the first place, you will not have chronic sorrow. Chronic sorrow occurs when you are living a situation that society's assumptions considers intolerable and you have found a way to cope while still accepting society's assumptions.
Ettina