“Sibling issues” in the New York Times.

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The New York Times published an article, earlier, on siblings of disabled people. While they did publish Kassiane Sibley’s response, they also published the following response from Vera Kornylak (emphasis mine):

The emotional burden of having a sibling with a disability pervades so many aspects of “typical” adult life, among them making decisions about marriage (some spouses don’t want that extra child for life), having children (constantly worried your children will be disabled) and deciding where to live (must be close to facilities that provide long-term care).

I’ve always been puzzled by “sibling issues,” myself. I have one autistic and one non-autistic sibling. I’ve never had a problem with either one of them that came back to whether they were autistic or not. I have no idea what “issues” I’m supposed to have with either one of them based on autism-status. The idea of going to a support group of other siblings horrifies me, in part because I’m probably exactly the sort of person they want to get away from and I don’t fit into the plans very well. (Hint: For a lot of the things that really are hereditary, there’s more than one of us per family.) Also because I’ve had enough experience of support groups for family members, to know that they often degenerate into bashing disabled people in general (which is sanctified in some way as “sharing their honest feelings”) and our presence can be very unwelcome because it disrupts the atmosphere where that’s okay.

The phrases I highlighted showed some of the more disturbing aspects of Kornylak’s attitude. Apparently if we need assistance with things, we’re an “extra child for life”, and an “emotional burden” on our families just by existing. She may have loved her sibling as a kid, but for some reason she doesn’t want to bring someone else like her sibling into the world, and apparently agonizes over it. And she thinks she has to live near an institution. (Although in all fairness I might rather live in an institution than with a sister who thinks of me that way, and that’s saying a lot.)

One of my friends before, I met through an agency we were both clients of. She had very little conventional speech, and I watched her carefully to learn (for myself) some alternative ways of communicating, since she never used technology for that purpose. As far as I was concerned, she was clearly very aware of what was going on around her, more than most people even, always reacted to it, and was always saying things about it. And very socially adept, with tons of friends. Which is why I was surprised by her brother’s attitude towards her.

When I first met her, she lived with her brother. And we would stand around, and he would talk about her as if she was not there at all. Right in front of her. He’d say things like, “She looks at the TV listings for a long time before picking what to watch, but who knows if she actually can read things like that, I mean, you know…” trailing off into some sort of assumption of incompetence that he assumed we all shared. He also talked openly about some pretty disgusting opinions of her. He seemed puzzled by my anger at his patronizing attitude.

He was, however, reportedly impressed by my communication device. He’d never heard of anyone who couldn’t speak being able to think or communicate. Which meant that he thought of his sister as non-thinking and non-communicative, despite the fact that he communicated with her on a regular basis. How anyone could look at her and think that baffles me. I can still remember exactly how excited she was to move out of her brother’s house into her own house, with the aid of a supported living program that allowed her to get help with some things.

Attitudes like her brother’s, though, tend to be viewed as more acceptable than attitudes like mine, and possibly hers. My general attitude towards him was “I hope he’s not around when I go to see her, because I don’t want to deal with that patronizing jerk.” She was always more animated when he was gone, too. Kassiane is right. They never ask us about our siblings. Mine were okay to me (or only not-okay in ways that had nothing to do with autism status), and I know others who have been okay. But I’ve met a lot of outright nasty ones, whose attitudes towards us as perpetual children and emotional burdens, and whose hope that they have no children like us, are enshrined and encouraged by attention to “sibling issues”.

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26 responses »

  1. Mike’s comment above does throw some light on why siblings can sometimes gang up on their disabled brother or sister. Quite simply, if they don’t join in the bullying and teasing, then they will end up bullied themselves. And so peer pressure wins out. I had some personal experience of this when I was a child when my brother an dister both joined in with their friends in pushing me about. Thankfully those times are long gone and we get along fine dnow.

  2. Katie and Mattie have always been loyal to each other, against the rest of the world at least. They have had some tremendous fights when the rest of the world wasn’t watching.

  3. Here’s exactly what gives me pains in the spleen about the ‘tragedy of autism’ publicity. They don’t really focus on the autistic people. They focus on the parents. It’s the parents that are having the tragedy.

    Autism has a terrible impact on the family. It’s so devastating to the parents.

    These are the same promotions that project the “tragedy” onto the kid (who of course has a real child in there struggling to get out), who will need “early intervention” (punishment, er I mean ABA) and probably “need care for the rest of his life” (showing the effectiveness of the early intervention). *headdesk*

  4. Your new blog looks great! It just keeps getting better and better.

    Vera Kornylak’s letter uses some language that reinforces and perpetuates bias, and probably triggers strong reactions on those who are most directly affected by them. But if the language were changed a little, say from “emotional burden” to “emotional stressors”, and “some spouses don’t want that extra dependent for life”, I can relate her points. It’s a simple matter of finite resources. Having a disability, and helping someone who has one, requires extra creativiity, pateince, energy, humor, perservence, and money. When these resouces fall short, stress and trauma happen.

    We wish for a society that provided adequate support for disapled people who can’t support themselves. We’re not there yet. The fact is that most people who have children don’t do so with the thought in mind that maybe their children won’t grow up to be self-supporting. Dealing with the possibility of family member who will need lifelong support is very stressful.

    If siblings of disabled people don’t want to bring more disabled poeple into the world, that choice ought to be respected. No parent should be forced to have a child she or he doesn’t want whether that child id typicaly. In my case, had I know via some sort of test that my son would have nonverbal,
    “Kanner” autidm, I would have thoght hard about whether to carry him to term. I am very glad I did, and believe that sharing my experiences is the best form of advocacy. I would not approve of legislative restriction on reprodictive freedom.
    thanks,
    Jim

  5. Currently, there’s not as much freedom in that arena as there is coercion. If a parent is known to be carrying a disabled fetus, then doctors will often counsel abortion and give the worst-case scenarios playing on the stereotypes and prejudices of the parents and the notion that society just “is how it is” and so forth. Many people are openly ridiculed or said to not be following medical advice (or have other obstacles put in their path by the medical profession and often everyone around them), if they choose to carry a fetus to term once they know that the fetus is disabled. Moreover, society isn’t set up to provide resources to our parents, and that becomes a kind of pressure as well. That, to me, isn’t reproductive freedom at all, it’s near-total coercion in one direction.

    Also, to me, there’s a difference between “restricting reproductive freedom” in general, and restricting the use of any tool when used towards genocide (or “eugenocide” as Dick Sobsey calls it, since disability, and many other important things, are not currently covered in the official definition of “genocide”). There are a lot of perfectly harmless actions or objects that can be grossly misused towards genocide. As well as a lot of actions or objects which may be considered okay in some circumstances, not okay in others, and really not okay when used as part of a widespread act to destroy an entire kind of person (for instance, shooting someone in self-defense is considered more okay than shooting someone for most other reasons which is considered more okay than shooting or even encouraging people to shoot an entire kind of person exclusively — although obviously some people believe that shooting someone is never okay).

    And as a lot of people have said before, there’s a difference between “the right to choose whether” and “the right to choose what kind”, no matter what side of that particular debate you’re on.

  6. Sorry about the amazing number of typographical and grammatic errors in my comment above. I was extremely sleepy when I wrote it.

    I respect the points you make in your reply, and acknowledge that they are extremely important principles, at least as important as the ones I raised. I am very hesitant to say that any single principle that either of us has raised is so powerful that it necessarily trumps all the other ones. This is also true of the meta-principles like “slippery slope” and “tragedy of the commons”.

    Before venturing further into the extremely difficult area of selective abortion, I would like to emphasize that Vera Kornylak’s letter didn’t express a point of view on that issue. She did say that the concern of having disabled children weighed heavily. This is a real concern that I experience all the time. It doesn’t bother me that my son Ben has autism (he prefers “people first” language, so that’s what I use when talking about him; I understand and pretty much agree with the arguments for both “has autism” and “is autistic”). He is carrying on a “family tradition” (cf. my webpage), and I love the journey of discovery that goes along with raising him. What stresses me out is the prospect and the reality of not having enough resources to accomodate his needs, particularly in his adulthood. Ben is an only child precisely because I, partly due to the limitations of my own wiring, couldn’t handle having another autistic kid. Does that mean that I’m bigoted? Bigoted against my own genes? I think it means that I’m pragmatic. There is only so much that I can do.

    On abortion: do we want a “eugenicized” society? I certainly don’t. Do we want to oblige parents to continue a pregnancy if doing so means that the child will be severely neglected and abused? I certainly don’t. Obviously these principles are going to come into conflict. As a general approach, I favor education, counseling, and better funding for supporting the disabled population. I agree that parents are given way too much “false despair” about the capabilities of developmentally disabled kids. I agree that the “right to choose” is not an absolute right. But neither is the “right to services”. I think we need to make the world the best possible place for people of all wirings to live. I don’t think that a child of ANY wiring should be forced to come into this world if xe is highly likely to receive the worst of what it can and all too often does offer.

    best regards,
    Jim

  7. I saw that she didn’t mention selective abortion, but I assumed that was what you were talking about with “reproductive freedom”.

    As far as bringing children into the world who are likely to experience the worst it has to offer, I don’t think that’s convincing to me. Seems we ought to change what the world has to offer, instead, otherwise I shouldn’t have been born certainly since I’ve seen not the worst but among the worst things that people can do to other people in the name of disability.

  8. Well, I’m very glad you were born because I think your writing is superb. What you have written (particularly the stuff about your experiences with sensory processing and motor planning) has had a very positive impact on how I’ve approached parenting. No one could have foreseen those consequences. But that’s true of many consequences, good and bad.

    Yes, it’s true that you might not have been born had your parents decided that they didn’t want to have you. But the same is true for me, or anyone. There are people in this world, right now, who wish they hadn’t been born. I would wager there is some significant intersection between that population and the population who were unwanted by their parents. Is your experience, or mine, sufficient to negate theirs?

    My arguments for permitting abortion are generic, and extend beyond disability. I also find the prospect of eugenics, and “eugenocide”, abhorrent. I don’t see an easy way to reconcile these positions, certainly not as a blanket rule to be applied in all situations. I don’t think that the prospect of your not existing, or my not existing, or Jonas Salk’s or Jack Abramoff’s or Saddam Hussein’s not existing, is sufficient to resolve the issue.

    I think abortion should be allowed in some circumstances, basically following Roe v. Wade logic, and striving for “safe, legal and rare”. I respect that you or others may differ and that you have good reasons. I wish that more people, whatever their view on abortion, agreed with you and I on the importance of working to improve what the world has to offer ALL of the already-born.

    In that spirit, getting back to the original thread, I don’t discount the common ground that I have with people like Vera Kornylak. As with some of the abolitionist whites of the 19th century, there are people who can be allies while still harboring patronizing attitudes. (Perhaps I come across as something of an abolitionist mulatto in that regard.) Everyone has a role to play, and I guess ultimately we can only speak from our own experience while doing the best we can to understand and account for that of others.

    best regards,
    Jim

  9. Apply your “wish they’d never been born” comment to people of any other kind of people besides disabled people, who have been subject to genocide or torture, and then get back to me on that.

    I’ve never agreed with the “speak for only your own experience” model of reality, nor the “some people believe something therefore their viewpoints are just as valid” model. Those both assume the individuals-floating-in-a-vacuum thing that doesn’t actually exist.

  10. I didn’t have time for a fuller reply above, and there is one point that I’m not sure I expressed adequately. (This will also be my last comment unless you indicate a desire to continue.) Regarding Vera Kornylak’s letter, you say “but for some reason she doesn’t want to bring someone else like her sibling into the world, and apparently agonizes over it” and criticize this attitude as disturbing. I think your criticism overlooks the reality that the resources on which the writer relies are not unlimited. The abortion issue doesn’t even enter into this. Her brother actually exists. Her potential progeny doesn’t. Who is more important? Whom should she focus on taking care of? Should she just have a kid and hope that if the kid turns out to be disabled, additional services will materialize? Why is it disturbing that she would exercise such foresight and discretion? Perhaps it is disturbing only in the context of her other comments; that I can understand.

    Thanks for providing the space for me to comment on that.

    I do agree, btw, that we aren’t individuals floating in a vacuum. That very fact underscores the relevance of both humility and compassion when difficult ethical issues arise. That is not to say that all moral views are equivalent. But I would say that all propositions, moral and otherwise, are provisional because they are necessarily based on finite bodies of experience and knowledge. Perhaps those who disagree are blessed with unlimited access to such resources. That would be a remarkable gift.

    best regards,
    Jim

  11. If there was any indication that Vera Kornylak was thinking in the terms that you describe then I’d be as sympathetic to her as you are (well almost) but the entire tone of her article seems to be that her brother is a burden to her and she doesn’t want a child like that of her own, full stop, whether there is support or what have you does not seem to enter the argument. On the abortion issue, as a socialist I support abortion on demnad – the woman alone should decide these issues, it’s her choice. And yes that does include if she just can’t stnad the thought of having a disabled child. To use an analogy, if someone discovered a genetic test for homosexuality, and this led to some homophobic women aborting their gay fetuses, then even though I am a staunch supporter of gay rights I would still defend their right to have the abortion. It’s their body, therefore it’s theri choice. It’s a differnet thing altogether when the medical/ political/ whatever establishment decides that a certain subgroup of people are undesirable and want to use genetic screening to ensure they are all painlessly aborted before birth/

  12. “Ben is an only child precisely because I, partly due to the limitations of my own wiring, couldn’t handle having another autistic kid.”
    What do you mean by “limitations of your own wiring”? I can think of several ways to interpret that. One is somer kind of argument that people are “wired” to be prejudiced, which seems like a dangerous attitude leading either to accepting things that shouldn’t be accepted or stigmatizing prejudiced people as inherently bad. Neither of which I support.
    Another possible interpretation is that you consider some of your neurological traitts as meaning you would be unable to look after more than one autistic child, while being able to care for some additional NT children. This is less easy for me to reply to. Firstly, assuming this is true, it’s not simple. “Difficultness” is not a straightforward aspect to rearing certain types of children, but rather depends on the interaction between the child, the parent and the environment. For example, comparing gifted preschoolers to developmentally delayed (mentally retarded) preschoolers, either can be seen as more difficult. Self-care skills stay at a low level longer, for example a kid being toilet trained at 6 rather than 3 years old, which makes care more difficult in some ways. Gifted kids, assuming no other oddities, are average or advanced in self-care. But an 18 month old who walks well, climbs, and easily figures out how to get through barriers that stump most kids (an accurate description of many gifted kids) will need more supervision than an 18 month old who can sit with assistance and hold their head up but can’t roll over, crawl or walk. Or even a crawling 18 month old. So in that way gifted kids are harder to care for. Which takes greater prominence depends on numerous factors such as parental traits, demands of the environment and so on. For example, a parent of a gifted kid who is good at thinking up ways to amuse a preschooler and keep them safe but is really grossed out by dirty diapers would find their child easier to look after than a DD kid. However, a parent who doesn’t mind diapers but who finds chasing after a small child difficult will find a nonambulatory kid easier. And that second example illustrates how this varies with age, as well, because if the kid learns to walk, they are likely to be needing close supervision for longer than most children. Also, environmental factors are important. A parent who has little time or money will have more difficulty with certain traits. A kid who can’t easily escape from a playpen, for example, may be easier for a parent in a hurry to finish their thesis than a kid who can only be kept safe and in one area by being given constant attention. This benefit may outweigh increased need for care. However, a low-income parent may find buying diapers to be a major burden, and the sooner the child is toilet trained, the better. There are piles of factors involved, some that can be modified and some that can’t, and those that can or can’t be modified are spread throughout all kinds. For example, it may be possible to speed up toilet training somewhat, or buy cloth diapers so less money is spent (but more time) or get a better-paying job. Or it may not be possible, or possible only with drawbacks outweighing the benefits (what if you don’t have time for cloth diapers, or the only better-paying job available cuts down on time to the point where the money required for childcare means you’re no richer overall?).
    Also, emotional factors are important. A parent of an 18 month old who is just learning to crawl will have a harder time coping if she views it as “the poor child bravely struggling to overcome his disabilities” than if she views it as “wow, he’s learning something new!” Our society tends to encourage people to view disabled people as tragic burdens and gifted kids as wonderful (it’s right in the name, they are “gifted”). But it could be viewed differently.

  13. This is a very belated reply to Ettina, who commented on my statement that “Ben is an only child precisely because I, partly due to the limitations of my own wiring, couldn’t handle having another autistic kid.” Sorry I wasn’t clearer. Actually, I probably couldn’t handle having another kid of ANY wiring, but particularly another child with Ben’s wiring. He is extremely hyperactive, intellectually gifted, has significant difficulties with communication (he’s nonverbal, but FC’s) and self-care, and needs a lot of one-on-one support. This requires a great deal of my energy and attention, more than a typically-developing kid would (which is a fact, not a value judgement).

    As for my wiring, no, I’m not “wired for prejudice”, and I would dispute the notion that anyone is. I have mild inattentive-type ADD (Dx’d) and am mildly on the autism spectrum (self-Dx’d), am more of a “sprinter” than a “marathon runner”, and need more downtime (including time by myself) to recharge than I have generally gotten since I became a parent. I don’t think I could handle getting even a dog at this point, let alone another kid. I’m not complaining, because I can’t imagine a life much more fulfilling than the one I live with Ben exactly as it is. I’m just trying to be honest about my limitations. It’s better for both Ben and myself, and my wife, whose plate is also very full, that we have chosen not to take on the responsibility for another child.

    Anyone who calls that prejudice, imo, needs to walk a mile in my shoes, and then call me prejudiced when they’re a mile away from me, and have my shoes (apologies to Stephen Wright for that quip).

    I’d also add that my attitudes toward all life, including the sanctity of fetal human and all animal life, have been undergoing a continual shift in the direction of “preservation” and “avoidance of slippery slopes where possible”. For example, six months ago, I would have had much less hesitation about agreeing with the outcome of the Terry Shiavo case. Now, I would tend to say that absent a living will, she should have been kept alive. I’m also more strongly convinced of the ethical arguments against killing animals and eating their flesh, FWIW. All of this is directly related to being punched in the gut, via Autcom and so on, with the realization that a person’s appearance (including what I am able to perceive of their behavior) often has very little to do with what’s actually going on inside them.

  14. Well I told her not to… This is in response to the “controversy” regarding my wife Vera’s honest and thought-provoking letter/response to the New York Times. While I’m glad to see that it generated open-minded discussion (Jim), I am disappointed that this letter has been so taken out of context.

    Autism is a spectrum disorder. The sibling to which she refers will need life-long care: to eat, to dress, to bathe, to go to the bathroom. Though we may hope, he will never discuss ontology, maintain a blog, or write a book on what it is like to be autistic. Still, his “disorder” falls under the same spectrum of Autism, which includes individuals high-functioning enough to do these wonderful things.

    Horrifying as it may seem to some, families of children with a high level of disability carry a burden. This does not necessarily mean the children are not loved as wonderful, unique individuals by their friends and family. That Vera’s brother is verbal at all is a testament to the love, care and yes, hard work of his family.

    To ignore the simple reality of this burden is to deny that families of austistic children *may* need help, both directly through special services and indirectly through tolerance and education of the rest of our society.

    If you would prefer to live in an institution than with a sister who “thinks of you [as a burden],” it is assumed that you also have that choice, which not everyone has. Don’t denigrate the “whiners.” We are your loving family.

    Thanks for your insightful and intelligent blog.
    Andrew Kornylak

  15. I need assistance with all of the things you describe, possibly not to the same degree but assistance nonetheless. The autism “spectrum” also includes people who can write but have immense difficulties with other aspects of daily living.

    If you live in a place where institutions or living with family are the only choices, you need to advocate for better choices, you don’t need to advocate for seeing disabled people as burdens. You can get the point across about the assistance we need without describing us as burdens or permanent children or undesirable possible future children as well.

    There are plenty of families that do exactly that and don’t whine. My loving family doesn’t whine about my existence. They have fought for services for me without casting me as a burden. I don’t know you, and I don’t think you’re my family.

  16. You misunderstand Mr. and Mrs. Kornylak’s simple message about her brother, which demonstrates an incapacity to empathize.

    You trivialize their burden, which demonstrates an overwhelming ego.

    You twist their words, which demonstrates low character.

    You don’t know what your loving family thinks about you, you lack the capacity. Your words on that are vacuous. So too, your words on Mr. and Mrs. Kornylak are null and void.

  17. No, I actually see this from the same standpoint as most people in the disability rights movement, which demonstrates an ability to look at things from more than the immediate perspective my surrounding society would have me take on a situation.

    It’s not a misunderstanding, it’s a difference of opinion. It’s not a simple message, there are complexities hidden under it in the assumptions that our society would have us make about disabled people, and complexities in the consequences of doing so.

    It’s not trivialization, it’s a totally different take on what it means to view disabled people as burdens.

    It’s not twisting people’s words, it’s seeing their words from a perspective that they probably don’t.

    And I happen to know my family very well. I also know that automatically and entirely nullifying someone’s words and declaring them vacuous instead of actually engaging with the ideas is far more personally nasty than simply disagreeing with them.

    If you’re going to go to a blog by a disability rights activist, you will hear at least some opinions similar to this, no matter who they are and what your assessment of their character is. That is because we have developed other ways of thinking about disability than the one our societies hand us pre-formed.

    My brother is autistic, by the way.

  18. According to Mr. and Mrs. Kornylak, her autistic brother has severe developmental disabilities. He requires assistance for every basic human function and always will.

    The emotional burdens she describes are understandable and legitimate, yet, in a fit of intolerance, you twist her words into a characerization of her brother as a burden. You go on to project your incomplete understanding of her situation onto yourself, indifferent to her situation, which differs from yours. It is precisely your immediate perspective that you reflect.

    Mrs. Kornylak’s hope for children who are not disabled is natural and healthy. If this disturbs you, then you are the unhealthy one.

  19. “a reader” introduces some sour bigotry into an otherwise serious and thoughtful discussion, in which ballastexistenz’s contributions are as usual from a perspective of broad compassion.

    “a reader’s” nastiness is a very poor advertisement for the empathy “a reader” implicitly boast of.

  20. Dinah’s remarks are transparent doublespeak. It is precisely ballastexistenz’s bigotry and lack of compassion to which I object.

  21. My child will never be able to “get a job and live independently.” If I died tomorrow, it’s quite likely that none of our relatives would take over and do what I do (which is quite a bit, and some of it would be classified by strangers as “unpleasant” and might be more like “horrifying” to some delicate souls). Some of these tasks could not be done by the child’s sibling (not a half sibling but a full sibling). I could hope that that sibling would agree to have the ASD sibling live with her/him, but I don’t think that would happen, given all what I know.

    So, the answer would be for my child to get a situation like Ballastexistenz has, with perhaps a bit more care in some areas than Ballastexistenz and a some less in other areas. My child would need a case worker to make medical decisions, I think Ballastexistenz can do that for herself much like a typical person does.

    The whole point is that society can step up to the plate and provide dignified situations for disabled people, in their own homes, without saying, “LOOK AT WHAT WE HAVE TO DO FOR THESE HEINOUS BURDENS!”

    A “normal” sibling can turn into an extremely handicapped sibling in 1 second- say in a car crash. They could turn into a person in a power wheelchair controlling it with a mouth stick and unable to speak. Or maybe that person would just be in bed for the majority of the rest of his or her life. That’s what life is, dear hearts. Fragile.

    My typical adult child might have a harder time finding a spouse because of the spectre of the (cue the spooky music) disabled sibling. But think of all the slimy creeps that would be weeded out by that “hiddeously shocking idea of possible be stuck with the disabled sib.” Also, if future spouses learn of the disabled sibling, they might shudder to have a similar child of their own (you know genes and things run in families) another way to filter out the scum in potential spouses. Only ones with big hearts and lots of integrity would be likely to stay around for the courtship.

  22. With proper support, I could certainly live idenependantly, unfortunately I’m probably too high functioning to get that support (due to the assumption, contradicted by virtually every ‘high functioning’ autistic person I’ve ever met/heard of, that high functioning autistics have no self-care problems).
    I’m currently living with my parents, and probably will for some time, despite being legally an adult.
    I have plans for attempting living independently in the future, especially if I can find ways to accomodate the various problems I have with that, but may not be successful.
    If so, I am pretty certain my brother would not view me as a ‘burden’ if I lived with him. He could handle the stuff I find hard while I assisted with stuff that is easy for me. For example, I’m great at babysitting.
    I’m planning on having a disabled child some day (either by adoption or simply getting a sperm donor who seems autistic, since it’s my impression that about 50% of kids with two autistic parents are autistic). I would not view even a severely disabled child as a burden. A burdensome person is someone who gets assistance but doesn’t give anything back. I can see how some people may not accept the gifts that are offered by a relationship with a disabled person, but that doesn’t mean they don’t exist.

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