I was just thinking about how much the disability rights activism parallels the trans activism..at its heart there is some kind of gnostic theology driving it--that the physical body is in some way a deception--that one's essence isn't connected with or determined by one's physical body.
Once again, a column with clarity and insight. As a former classroom aide and a one on one aide for severely autistic children, I have witnesses the idea that Lutz writes about played out dozens of times. I have seen parents hang on to a coincidental even as irrefutable evidence that their severely autistic and non verbal child is “normal” inside. That a 14 year old who has never been toilet trained is really thinking about weighty subjects that preclude bathroom business. Thanks for this column
"What is the “intact mind”? It’s Lutz’s term for the theory that every person with an intellectual or cognitive or developmental disability must necessarily have some other version of themselves trapped inside their heads, a “normal” version. So a nonverbal autistic person, like Lutz’s son Jonah, is presumed in the conventional narrative to have another self that could potentially be reached with the correct intervention. In a thorough review of memoirs written by autistic parents and autistic people (the latter of which are sometimes dubious), she again and again finds the assumption that there’s a fully functional person “somewhere in there.” As she notes, with compassion that’s both obvious and very understandable, there’s simply no reason to believe that this is true..."
Belief in souls and essences pops up yet again. This is the same thinking re: "I know grandpa is still there underneath the severe Alzheimer's". But unfortunately he isn't there.
Many "disability advocates" seem to do about as much for the disabled as "homelessness advocates" do for the homeless, i.e. somewhere between nothing and being actively counterproductive.
Interesting that you mention the spiritual part of this. It’s the idea that the true nature of the world is true and just and it is only through the work of man that it is corrupted. When in reality the true nature of the world is unjust.
I think the most significant phenomenon in religious belief is the found in the reversal of where spirit emanates from (human labor and action) by projecting it outside of humanity into some abstract ethereal entity, which is then pursued in the hopes of recovering some now-lost wholeness of man who has been “corrupted”.
“Belief in souls and essences pops up yet again. This is the same thinking re: "I know grandpa is still there underneath the severe Alzheimer's". But unfortunately he isn't there.”
A lot of areas where this kind of thing informs legal and policy issues. Abortion. End of life care. Even some discussions of identity (a soul of a ‘X’ in a body of a ‘Y’).
Abortion is nuanced though. Opinion polling on abortion mirrors an issue like gun control--wide majorities think it should be legal but favor some restrictions (no machine guns or grenade launchers).
In other words a lot of people are perfectly fine with abortion at 12 week but grow increasingly uneasy as the fetus approaches the seven month mark.
Yes. I included abortion because religious beliefs about “souls and essences” seem to be a major impetus for earlier abortion restrictions and even birth control. It’s hard for me to comprehend how someone can consider the killing of a zygote to be “murder” without drawing from such a belief.
In the case of "identity" at least its possible to replace "soul" with something more concrete like "mind" or "brain" and still make sense. My favorite example of this is an issue of "Doom Patrol" where Robotman expresses confusion about the gender of Coagula, a transgender superheroine. Coagula points out that Robotman is a human brain in a purely mechanical body, but that doesn't stop him from thinking of himself as a man.
I could say that it's due to people incompletely leaving their religion (that they may not have understood), and consequently not realizing all the underlying assumptions. Or that religion touches (or builds itself off of) ideas common and dear to humanity.
I think there's a grain of truth to some of these ideas, in that the part of us we consider the core of our identity is information, rather than matter. For example, imagine scientists were to someday invent a machine that could transfer information between brains as easily as it is currently transferred between USB drives. If, in this world, the information in Alice's brain was transferred into Bob's brain, the resulting person would refer to herself as Alice, remember being Alice, and probably still think of herself as a woman, even though she was now in Bob's body. The error lies in taking this grain of truth and making the unjustified assumption that the information can exist completely independently of the medium that stores it. This leads to the idea that the information is somehow still there even if the storage medium has been destroyed (in the case of brain damage and Alzheimers) or never existed (in the case of severe cognitive impairment from birth).
I think everyone believes in some concept of a soul, even if it's largely metaphorical. We don't inhabit our bodies as much as we are entangled with them. As much as transcending the flesh sounds nice, it's not in the near future.
The last two years of my mother's life three quarters of who she had been was gone. The last eight months perhaps only a tenth was left and her cognition in constant retreat. I know I'm out of touch with the modern world, but I don't see why its so hard for people to see that "they" deserve the best we can give them, but accept that much is gone or was never there.
I wonder if we've gotten so accustomed to altering things through medications (thank God) or other successful interventions, that some people find it impossible to accept that some things can't be fixed yet and the least restrictive, safe, supportive environment is the best we can do.
Freddie at his absolute best here. This is why so many people in this country despise elites. They have no clue about anything. This is the latest in the utopian garbage that Ivy League set tries to shove down the throats of the American public. I have a nonverbal autistic son who is about to turn 19. We moved him into an Intermediate Care Facility last year because his needs were too much. It was the single worst day of my life. To trot out high functioning autistic people as being representative of autism is borderline evil.
It’s not just the elite by any stretch. Many many people are made profoundly uncomfortable by existence of the congenitally disabled. They refuse to acknowledge that they can exist. They can’t accept that the fundamental nature of reality is extraordinary unjust.
"They can’t accept that the fundamental nature of reality is extraordinary unjust."
This is one of those truths that many (especially modern Progressives) refuse to believe. Kind of like the old "the universe doesn't care about you" idea, which is also true.
I also think it's a glaring flaw in anyone's belief system to not accept that reality. Normally I would say deny it at your own detriment, but I feel like it's gotten to a point where some are trying to force others to deny it as well...which is alarming to say the least.
Being a feral cat has its difficulties and its joys, but if you do not quickly take it to heart that the universe does not care about you or your existence, about fairness or justice or anything else, you will not remain a cat for long.
There's a strain of Evangelical positive thinking that described disabled children as a "Gift from God" to parents to test and strengthen their faith. It's a conservative mirror image of the Pink Ribbon positive thinking that Barbara Ehrenreich critiques in Bright Sided.
Aspergers itself is a discredited diagnosis, and for good reason; it's a deeply flawed and surprisingly vague diagnosis, founded on a misunderstanding of what autism is and how it works. It's as scientifically valid as claiming that autism is caused by 'refrigerator mothers.'
Admittedly anecdotal, but my experience of parents declaring their autistic child to have 'Aspergers' is a convenient - and ostensibly inoffensive - euphemism for differentiating their fascinating savant from my dull mongoloid. At best, it's a poignant symptom of a parent's unwillingness to come to terms with their child's diagnosis. Either way, it needs to stop.
I also know tons of people who might be best described as having STEM major personalities who are self diagnosing or shopping for autism diagnoses. Definitely there's some social awkwardness there, but it's very different from what would've been considered autism (or even Asperger's) 20 years ago.
I considered that I might have ADHD for about 30 seconds until I realized that I have never in my 40 years exhibited any symptoms of it until I became, like a good chunk of us, pretty addicted to my phone.
My cynicism is now almost overwhelming me (but I take comfort in the knowledge that there'll be a diagnosis available for this soon). Nevertheless, how is it that so many (obviously not all) adult ADHD sufferers can summon the resolve to suspend their crippling symptoms in order to navigate the perilous process of successfully gaining a diagnosis?
It's comparable to Plato's insistence that only those who don't seek power are qualified to hold it. If you're doggedly, independently capable of achieving such a diagnosis, chances are, you don't warrant one.
I dunno, it’s not that hard. I feel like most folks do it in college, and it’s rather straightforward to set up an appointment with the counseling center.
And now there are Cerebral and the other online pill mills.
It becomes a race to the bottom, though how the fk do you define ADHD anyway? Life pulls our attention in ways that we didn’t evolve for. Though I think it would be better to let people get adderall, or anabolics for that matter, as performance-enhancing drugs rather than demanding folks get a diagnosis, because ADHD is a continuum and some folks are going to be able to manipulate a diagnosis with minimal symptoms and those who don’t get screwed as that’s their competition for the curve or the promotion or whatever. Better to make it available upon request and inform people of the risks, imho
I respect the letters after your name, but another psychiatrist-blogger (Scott Alexander) has a post on how it's completely meaningless to only prescribe Ritalin to people who "really have" ADHD because the diagnostic is an arbitrary cut-off point on a continuous spectrum.
Does autism separate cleanly into people who truly do/don't have it? Or is there just some continuum of how systematising your brain is, and from some point on it's enough of an impairment to get a name?
I agree with Scott as far as I understand his position. There aren’t easy cutoff points for many of these things, and it is to some extent arbitrary. But that doesn’t mean there is no difference between obviously not having ADHD or autism and having it. The presence of gray areas doesn’t mean there aren’t any distinctions to be made.
If you think the elites have no clue about anything, wait until you meet some of the non-elites (also - and when we say it, let's whisper - FdB is one of the elites).
Outstanding and eye-opening. I think it’s so important, for those of us with the desire to challenge these increasingly iron-clad norms in even well-meaning places and professions, to have very clear, articulable, and “back-uppable” reasons for doing so. This was that.
My law firm has one of these 14c-type programs. I am not precisely sure what we pay them and we get some government subsidy to do it. Mostly we have them do work that otherwise just wouldn't be done. Like delivering paystubs that of course are also posted electronically. Delivering circulated publications intraday that we could otherwise just have the regular intra-office mail staff do nightly. Sometimes they help the secretaries move old files when it requires a cart or whatever. It's obviously charity on our part, but I think it's money well spent. These plainly are people that are not going to be competing with non-disabled people for full wage or non-subsidized jobs. That's obvious within seconds.
Having a schedule, going to work, interacting with the world - these things have enormous benefit to human sanity. And my best guess is that these types of make-work jobs are an answer, or partial answer, for more people than just those diagnosed as mentally disabled.
My best friend growing up had an uncle on the spectrum. The uncle would often be at my friend's home. Eventually he started in one of these "make work" jobs. He loved it. It was so great for him.
The obvious pride that some of them have in doing their job really chokes me up some days. With others, you can't really tell what they are thinking, but either way, routine is important.
The local hospital near where I grew up had a janitor who was developmentally disabled. He worked hard, showed up every day and was proud to have a job, to be doing something to support himself.
When the fired this poor human as part of a set of cutbacks, people were pissed and raised enough of a stink that the hospital gave him his job back.
I really really like to see 14(c) workers. I was a tech in a HP rework facility in the 90s, Pride Industries contracted a lot of very low level labor with 14(c) employees. Most were fairly non-communicative, others were very high functioning. One twenty something kid we had seemed fully functional, yet couldn't add single digit numbers in his head, I mean numbers less than 5. From all outward appearances, personality, sociability, you'd think he's 100% ... For every three or so 14c employees there was a manager to assist the employees.
I then spent 21 years at an Intel plant, where 14c employees performed the janitorial work. These were mostly higher functioning folk, the highest functioning during the day. I worked all shifts and interacted with many across the years. I was glad to see them having something.
I have 2 high functioning adopted children on the spectrum, who were nonverbal until almost 4. Part of being a parent is having hopes and dreams for your child. There is an intense desire to find a "fix". All sorts of professionals claim to know the fix, often giving false hope.
As a paremt of such a child, there is so much concern that one is failing their child.
I am not opposed to parents providing all the help they can to such children, but the best thing I found to do was accepting them and stop hoping that they would be like "normal" kids. Accept their limitations and help them manage their lives.
And if things get better in some area eventually, be happy, even for the small successes.
“has been hijacked by activists who care more about their doctrine than the vulnerable people they ostensibly speak for.”
This is ubiquitous.
The Shirky Principle: “institutions will try to preserve the problem to which they are the solution.”
Fuck activists. The full-time permanent version. Really, I mean it. We need to reverse the positive status juice it derives. Activism in a working democracy is a part time gig… taking time away from a regular productive life to agitate for policy to address a cause. After the voting in done, the agitator needs to go back to her productive life. The activism should not be a career. The activism should not be the cream filling of an otherwise meaningless life. Because if so, it corrupts the mission and intent of the cause. It shifts the focus of importance to protecting the career of the activist and perpetuates the need for it.
Not until “professional activist” becomes an identity label much worse than MAGA will the perpetuation of problems not continue.
My beautiful and super intelligent niece is about done with her four year undergraduate degree from a known-prestigious school where she she dropped her interest in business and seeks a job in a non-profit where she will "have an impact changing the world". The problem is that she sees the latter as more status-making than the former. She will not be lazy in that role and that is a big part of the problem.
Elon Musk just had a great quote:
“History is written by the victors. Well, yes, but not if your enemies are still alive and have a lot of time on their hands to edit Wikipedia.”
I really think the key is for all of us to stop walking on egg shells around all this ideology of grievance and start pointing out that activism is a sewer profession. This is difficult for example when Hollywood portrays the activist as the hero and the business as the devil. But Hollywood is also a sewer.
I and many other radicals draw a distinction between activism and organizing. The former is exactly as you describe, while the latter seeks to build power that can solve the problem. The activist wants to draw a paycheck to perpetually raise awareness about poverty, while the organizer builds a union to bargain for higher wages.
The best organizers organize themselves out of a job.
I am very good with organizing and activism for a cause as a project. Projects are defined as a temporary endeavor with a unique goal. Projects end and the project participants return to their functional responsibilities and/or go on to the next project.
One thing that can be done to help with this is that the rules for non-profits involved in politics need to be strengthened. Non-profits that have a mission outside of politics that are found to be involved in politics should have their non-profit status revoked. Non-profits that are approved as political organizations should have to disclose donors and activities and be limited and restricted in that activity.
Let's use the mission of the Sierra Club as an example:
"To practice and promote the responsible use of the earth's ecosystems and resources; To educate and enlist humanity to protect and restore the quality of the natural and human environment; and to use all lawful means to carry out these objectives."
But in the 2019-2020 fiscal year, the Sierra Club gave about $400k to Democrat campaigns and $0 to Republican campaigns... even though many Republicans are committed to environmental causes.
In an annual audit of the Sierra Club, this should be a finding that could risk their non-profit status being revoked as they are acting more as a Democrat party PAC, than an organization focused on its approved mission.
The Sierra Club is a 501(c)(4) organization, deliberately, and every chapter and group will have a political committee that will make endorsements in elections. There is a separate Sierra Club Foundation, which is 501(c)(3), and they are, and need to be, very careful about separating c(3) and c(4) work, to not spend Foundation money on any political or otherwise prohibited work. Chapters and groups will have separate c(4) and c(3) accounts and ensure that only c(3)-qualified activities (e.g. educational) are paid from c(3) funds. The national office has compliance staff that chapters and groups need to get clearance from.
That is fine. But regardless, all 501 (x) non-profits have to get their application approved by the IRS and that application includes a designated mission. Today there is not much scrutiny of mission creep. There needs to be.
If there's no reason to presume that there's an ordinary "intact mind" somewhere inside each severely disabled person, then why should we presume that ordinary "moral rights" inhere inside of them? Why is it an "ugly moral assumption" to presume that "possession of a typical consciousness" is necessary for the possession of typical ethical claims? In one paragraph, you point out that activists have chosen to believe in an unfalsifiable "intact mind" hypothesis because it allows them to claim "intact rights" for the disabled; but in the very next paragraph, you point out that this is bad because it's harmful to the unfalsifiable "intact ethical rights" hypothesis.
Normal people can admit that individuals should care more about their friends and family than about strangers; that states should care more about upstanding citizens than foreigners and criminals; that employers should care more about the intelligent and hardworking; that pigs deserve better treatment than fish. I know that it's taboo to ask this, but why should I believe that the activists are wrong on this point -- that the lack of "conventional consciousness" implies a lack of the "moral desert" we conventionally grant to conscious beings?
If you were in a car accident and ended up in a vegetative state, I presume you'd want your body to be treated with respect and care by society, not simply left by the side of the road.
I have zero chance of becoming a cow in my lifetime. I have a non-zero chance of suffering an accident which puts me in a vegetative state. Ergo, I have a personal interest in how people in vegetative states are treated.
Feel free to bite the bullet and say that if you end up in a vegetative state, you grant the state full permission to harvest your organs for someone else's use.
I think the state should punish violent criminals. But I could become a violent criminal! Oh no I've been debunked by someone who clearly believes in her moral precepts enough to argue in good faith!
I don't understand your point, and your sarcasm isn't helping.
Am I incorrect in my assumption that you would like for your body to be treated with respect and care in the unlikely event you ended up in a vegetative state?
Human beings slaughter cows and pigs. At some point humanity says "Who cares?" with respect to the desires of cows and pigs.
On the other hand just about everyone agrees that even if violent criminals should be locked up their wishes with regards to humane imprisonment should be honored.
Murderers also slaughter humans. At some point, humanity says "who cares?" with respect to their desires to be free. On the other hand, just about everyone agrees that even though we slaughter cows and pigs, we should probably grant them a little more freedom to move than they currently tend to receive.
I don't understand why the existence of a moral boundary in one place would preclude the existence of a moral boundary in another place -- yes, humans regard humans as different from cows and pigs, but that doesn't mean that innocents regard innocents as different from criminals (if anything, it implies that drawing such moral boundaries is normal).
You have a non-zero chance of empathically expanding to care a lot more about animal suffering than you currently do. (We all do, I mean.) The self is flexible, because empathy is. And so you could someday have more self-interest in how cows are treated. Their mistreatment will hurt you, too.
I agree, but I still have zero chance of becoming a cow in my lifetime. While I may one day care far more about the welfare of cows than I currently do, to the point that the existence of abattoirs will deeply upset me, my concern for the welfare of cows will never be based in the self-preservation instinct.
Yet political heroes, and mothers, are often willing to die for those in their circle of care. The object of our instinct for self-preservation can enlargen as the self does.
Certainly not. That’s a health hazard. I would hope they would at least recycle.
Personally, if it’s a persistent vegetative state without a reasonable likelihood of recovery based on best current medical knowledge, I’d just as soon they gave me a shot to stop my heart and harvested anything salvageable. Especially if the alternative is saddling my estate and my spouse with crippling medical debt.
How does the crippling medical debt part work? I'm not aware of any facility that will keep the vegetative alive when funding runs out and care is typically expensive, so expensive that it's almost never individual households that pick up the tab unless they are the recipients of a large legal settlement.
For me, go ahead and keep me plugged in until the wheels fall off.
Like I said, keep me plugged in until the wheels fall off. And if the dispute is between my crazy spouse and my parents let it be known that my crazy spouse can go hang.
Responding to everyone who disagrees with you with sneering contempt doesn't suggest that you have a great deal of confidence in your own ability to argue your points.
It's a reflection of my judgment on the quality of the responses -- after all, your first response was "oh yeah well what if you got severely disabled in a painful way, then you'd have an interest in my understanding of moral rights you hypocrite." Bizarre -- often people at least pretend that "moral rights" are somehow different than a nice name for personal interests, & often they at least pretend that they have an argument besides contrived claims of hypothetical hypocrisy against their interlocutors.
The fact that you are still refusing to answer the simple question "would you want your body to be treated with respect and care if you ended up in a vegetative state?" suggests that the hypocrisy isn't "hypothetical" in the slightest, and that you know full well your answer to this question doesn't help your argument.
As I said before, you can totally bite the bullet and say "of course I would want my body to be treated with respect and care if this happened, but I still think the state should euthanise anyone who's in a vegetative state from which they are unlikely to recover". If you were to say something to that effect, I would be more than happy to admit that my assumption of hypocrisy on your part was misplaced.
Oh wow, Rawls had a thought experiment about how souls exist prior to the body -- this means that souls obviously exist prior to the body!
And yes, if I were under suspicion for a serious crime -- whether rightly or wrongly -- then I would obviously want to get off for it, even though I would strongly prefer a much harsher justice system. I just think you'd have to be severely intellectually disabled to be unable to understand this.
Even if there's reason to presume that there's an ordinary "intact mind" somewhere inside each severely disabled person, why should we presume that ordinary "moral rights" inhere inside of them? Or anybody for that matter?
Seems to me the "intact mind" is an IS question, while the "moral rights" is an ought question. There is no inherent conflict accepting one and not the other.
Ugh, my wife has three non-verbal autistic boys in her Kindergarten class this year. She gets 30 mins of extra help a day for it, in the form of a very overworked resource teacher. So those three boys don't get the support they need, and the other 24 kids in her class are basically ignored for most of the day as all her time is spent on the three.
Every single person involved recognizes it as a terrible situation that benefits no one.. But the school board is so convinced that "integrated" classrooms are the way to go that there is no hope of it changing.
It's a lot easier to insist on integrated classrooms if you aren't actually in the classroom dealing with 27 kids who need attention and 3 profoundly disabled kids who need constant support.
I used to think homeschooling was misguided, but I'm running into more and more "regular" folks who are pulling their kids out of public schools and homeschooling. These aren't religious nuts or "unschoolers." For them to make this leap things must be pretty bad in their kids' classrooms--it's a lot of work.
Trying to think of a practical difference between FC facilitators and spiritual mediums. I have no doubt more of the former genuinely believe in their practice than the latter in theirs, but each is an example, intentional or not, of duping people desperate to believe they can communicate with these loved ones when such a thing is clearly impossible. And I'm sure I'm not the only one who thought of a Ouija board when the letter board "technique" was described.
This is you at your best. Your writing on this topic has introduced me to an issue I knew nothing about and has taught me a lot. When you write that this is your most important political challenge, I tend to agree. It comes across from the passion and thoroughness with which you write.
"You have an intellectual class, within liberalism, within the Democratic Party, full of people who have never suffered,” deBoer said. “When that’s true… politics becomes a virtue contest. Politics is completely immaterial to [a member of the elite]. You will not suffer if a Republican goes into the White House. It won’t make a difference to you if they cut Medicaid, because you don’t need to be on Medicaid. It won’t make a difference to you if they cut food stamps, because you don’t need food stamps. So politics is permanently immaterial. That is the perfect breeding ground for the kind of politics where you say: ‘If they serve bánh mì in the college cafeteria that’s cultural appropriation.’"
On its own this behavior is merely juvenile and selfish. But what elevates it to the monstrous is when the real suffering of the less fortunate is co-opted in service to that narrative, often to the detriment of the people who are actually doing the suffering.
And it's petty. Whining about "cultural appropriation" completely misses serious racial issues. Nitpicking over pronouns leads to endless petty squabbling and time wasting.
Exactly! I don't understand why so many are taken in by this posturing. What this whole thing has shown me is that there are more fatuous/stupid/gullible people in the world than I had heretofore considered. Or, is it just that people want their illusions to be true so much that they are willing to look past the truth?
Yeah, I'm waiting for an open thread so I can discuss the book.
"Genuine compassion and respect is based on accepting who people actually are, not lying about who they are to squeeze them into an acceptable box."
Great points. Also, the approach of the activists alienates those who don't necessarily hate trans people, but object to the lying.
Another case of subtlety lost to binary thinking.
I was just thinking about how much the disability rights activism parallels the trans activism..at its heart there is some kind of gnostic theology driving it--that the physical body is in some way a deception--that one's essence isn't connected with or determined by one's physical body.
Perfect! 🌼
Once again, a column with clarity and insight. As a former classroom aide and a one on one aide for severely autistic children, I have witnesses the idea that Lutz writes about played out dozens of times. I have seen parents hang on to a coincidental even as irrefutable evidence that their severely autistic and non verbal child is “normal” inside. That a 14 year old who has never been toilet trained is really thinking about weighty subjects that preclude bathroom business. Thanks for this column
"What is the “intact mind”? It’s Lutz’s term for the theory that every person with an intellectual or cognitive or developmental disability must necessarily have some other version of themselves trapped inside their heads, a “normal” version. So a nonverbal autistic person, like Lutz’s son Jonah, is presumed in the conventional narrative to have another self that could potentially be reached with the correct intervention. In a thorough review of memoirs written by autistic parents and autistic people (the latter of which are sometimes dubious), she again and again finds the assumption that there’s a fully functional person “somewhere in there.” As she notes, with compassion that’s both obvious and very understandable, there’s simply no reason to believe that this is true..."
Belief in souls and essences pops up yet again. This is the same thinking re: "I know grandpa is still there underneath the severe Alzheimer's". But unfortunately he isn't there.
Many "disability advocates" seem to do about as much for the disabled as "homelessness advocates" do for the homeless, i.e. somewhere between nothing and being actively counterproductive.
(And yes FC is ludicrous horseshit.)
Thanks for writing.
Interesting that you mention the spiritual part of this. It’s the idea that the true nature of the world is true and just and it is only through the work of man that it is corrupted. When in reality the true nature of the world is unjust.
I think the most significant phenomenon in religious belief is the found in the reversal of where spirit emanates from (human labor and action) by projecting it outside of humanity into some abstract ethereal entity, which is then pursued in the hopes of recovering some now-lost wholeness of man who has been “corrupted”.
Myth of the Golden Age.
FC?
Facilitated communication.
Thanks. I suppose I should Google, but what the chocolate is that?
Did you even read the article you're commenting on? Half of the article is dedicating to explaining what facilitated communication is.
I hadn't gotten that far before I wanted to comment on something before it slipped my braid.
I don't want to tell you how to live your life, but Freddie has banned people for that
The definition is in the book review.
“Belief in souls and essences pops up yet again. This is the same thinking re: "I know grandpa is still there underneath the severe Alzheimer's". But unfortunately he isn't there.”
A lot of areas where this kind of thing informs legal and policy issues. Abortion. End of life care. Even some discussions of identity (a soul of a ‘X’ in a body of a ‘Y’).
Abortion is nuanced though. Opinion polling on abortion mirrors an issue like gun control--wide majorities think it should be legal but favor some restrictions (no machine guns or grenade launchers).
In other words a lot of people are perfectly fine with abortion at 12 week but grow increasingly uneasy as the fetus approaches the seven month mark.
Yes. I included abortion because religious beliefs about “souls and essences” seem to be a major impetus for earlier abortion restrictions and even birth control. It’s hard for me to comprehend how someone can consider the killing of a zygote to be “murder” without drawing from such a belief.
WRT birth control I have to point out that the most prominent example in terms of banning its use is from the Catholic Church.
Ironically, because at least up through Aquinas and Augustine, the standard for “ensoulment” was the “quickening” around (give or take) 14 weeks.
That's interesting. The comments section here is wonderful because I commonly learn stuff that I did not know before.
Also: "There can be only one!"
In the case of "identity" at least its possible to replace "soul" with something more concrete like "mind" or "brain" and still make sense. My favorite example of this is an issue of "Doom Patrol" where Robotman expresses confusion about the gender of Coagula, a transgender superheroine. Coagula points out that Robotman is a human brain in a purely mechanical body, but that doesn't stop him from thinking of himself as a man.
It's interesting how religious thinking shows up over and over again in the minds of the supposedly non-religious.
I could say that it's due to people incompletely leaving their religion (that they may not have understood), and consequently not realizing all the underlying assumptions. Or that religion touches (or builds itself off of) ideas common and dear to humanity.
I think there's a grain of truth to some of these ideas, in that the part of us we consider the core of our identity is information, rather than matter. For example, imagine scientists were to someday invent a machine that could transfer information between brains as easily as it is currently transferred between USB drives. If, in this world, the information in Alice's brain was transferred into Bob's brain, the resulting person would refer to herself as Alice, remember being Alice, and probably still think of herself as a woman, even though she was now in Bob's body. The error lies in taking this grain of truth and making the unjustified assumption that the information can exist completely independently of the medium that stores it. This leads to the idea that the information is somehow still there even if the storage medium has been destroyed (in the case of brain damage and Alzheimers) or never existed (in the case of severe cognitive impairment from birth).
I think everyone believes in some concept of a soul, even if it's largely metaphorical. We don't inhabit our bodies as much as we are entangled with them. As much as transcending the flesh sounds nice, it's not in the near future.
The last two years of my mother's life three quarters of who she had been was gone. The last eight months perhaps only a tenth was left and her cognition in constant retreat. I know I'm out of touch with the modern world, but I don't see why its so hard for people to see that "they" deserve the best we can give them, but accept that much is gone or was never there.
I wonder if we've gotten so accustomed to altering things through medications (thank God) or other successful interventions, that some people find it impossible to accept that some things can't be fixed yet and the least restrictive, safe, supportive environment is the best we can do.
Freddie at his absolute best here. This is why so many people in this country despise elites. They have no clue about anything. This is the latest in the utopian garbage that Ivy League set tries to shove down the throats of the American public. I have a nonverbal autistic son who is about to turn 19. We moved him into an Intermediate Care Facility last year because his needs were too much. It was the single worst day of my life. To trot out high functioning autistic people as being representative of autism is borderline evil.
It’s not just the elite by any stretch. Many many people are made profoundly uncomfortable by existence of the congenitally disabled. They refuse to acknowledge that they can exist. They can’t accept that the fundamental nature of reality is extraordinary unjust.
"They can’t accept that the fundamental nature of reality is extraordinary unjust."
This is one of those truths that many (especially modern Progressives) refuse to believe. Kind of like the old "the universe doesn't care about you" idea, which is also true.
I also think it's a glaring flaw in anyone's belief system to not accept that reality. Normally I would say deny it at your own detriment, but I feel like it's gotten to a point where some are trying to force others to deny it as well...which is alarming to say the least.
A equal proportion of conservatives are also unable to accept it. For both groups any unjust outcome must have at its source some flawed human choice.
Yes, the ancient “God made the world perfect and then Adam and Eve effed it up” idea.
Agree.
The focus of this book however is a specific political persuasion, and it's not conservatives.
Being a feral cat has its difficulties and its joys, but if you do not quickly take it to heart that the universe does not care about you or your existence, about fairness or justice or anything else, you will not remain a cat for long.
I have heard similar from Holocaust survivors.
Hey, are you also El Gato Malo or are there two people on substack doing this schtick? If you are, I recently started reading it. Good job!
No relation. No shtick.
There's a strain of Evangelical positive thinking that described disabled children as a "Gift from God" to parents to test and strengthen their faith. It's a conservative mirror image of the Pink Ribbon positive thinking that Barbara Ehrenreich critiques in Bright Sided.
💯
Not just high-functioning. The number of obviously non-autistic people claiming autism diagnoses now is getting thoroughly ridiculous.
Victim status is highly prized these days.
There also are plenty of self-diagnosed Aspergers out there.
Aspergers itself is a discredited diagnosis, and for good reason; it's a deeply flawed and surprisingly vague diagnosis, founded on a misunderstanding of what autism is and how it works. It's as scientifically valid as claiming that autism is caused by 'refrigerator mothers.'
Admittedly anecdotal, but my experience of parents declaring their autistic child to have 'Aspergers' is a convenient - and ostensibly inoffensive - euphemism for differentiating their fascinating savant from my dull mongoloid. At best, it's a poignant symptom of a parent's unwillingness to come to terms with their child's diagnosis. Either way, it needs to stop.
A generation ago, well-off parents sought diagboses of ADD or ADHD to rationalize Johnny's poor academic record.
A generation before that, dyslexia was the disease du jour.
Let's play "Which Self-ID are you today?" ;-)
Think Roy Lichtenstein, Pop Art, 1960s, falsetto voce: “Gosh, Chuck. I don't know. There are so many…”
I also know tons of people who might be best described as having STEM major personalities who are self diagnosing or shopping for autism diagnoses. Definitely there's some social awkwardness there, but it's very different from what would've been considered autism (or even Asperger's) 20 years ago.
Is this anecdotal or can you direct me to something to read about this?
Anecdotal, both from the patients I’ve seen and talking with other psychiatrists. But I’m sure there’s stuff written on this as well.
Not directly relevant, but you might find this interesting: https://www.psychologytoday.com/ca/blog/inspectrum/202308/tiktok-videos-on-autism-largely-inaccurate
The presumptions present in attention-deficient individuals who self-diagnose their medical conditions online is infuriating to me.
With the tech industry monetizing everyone’s attention, I think most people qualify for an ADD diagnosis these days
I considered that I might have ADHD for about 30 seconds until I realized that I have never in my 40 years exhibited any symptoms of it until I became, like a good chunk of us, pretty addicted to my phone.
My cynicism is now almost overwhelming me (but I take comfort in the knowledge that there'll be a diagnosis available for this soon). Nevertheless, how is it that so many (obviously not all) adult ADHD sufferers can summon the resolve to suspend their crippling symptoms in order to navigate the perilous process of successfully gaining a diagnosis?
It's comparable to Plato's insistence that only those who don't seek power are qualified to hold it. If you're doggedly, independently capable of achieving such a diagnosis, chances are, you don't warrant one.
I dunno, it’s not that hard. I feel like most folks do it in college, and it’s rather straightforward to set up an appointment with the counseling center.
And now there are Cerebral and the other online pill mills.
It becomes a race to the bottom, though how the fk do you define ADHD anyway? Life pulls our attention in ways that we didn’t evolve for. Though I think it would be better to let people get adderall, or anabolics for that matter, as performance-enhancing drugs rather than demanding folks get a diagnosis, because ADHD is a continuum and some folks are going to be able to manipulate a diagnosis with minimal symptoms and those who don’t get screwed as that’s their competition for the curve or the promotion or whatever. Better to make it available upon request and inform people of the risks, imho
I respect the letters after your name, but another psychiatrist-blogger (Scott Alexander) has a post on how it's completely meaningless to only prescribe Ritalin to people who "really have" ADHD because the diagnostic is an arbitrary cut-off point on a continuous spectrum.
Does autism separate cleanly into people who truly do/don't have it? Or is there just some continuum of how systematising your brain is, and from some point on it's enough of an impairment to get a name?
I agree with Scott as far as I understand his position. There aren’t easy cutoff points for many of these things, and it is to some extent arbitrary. But that doesn’t mean there is no difference between obviously not having ADHD or autism and having it. The presence of gray areas doesn’t mean there aren’t any distinctions to be made.
If you think the elites have no clue about anything, wait until you meet some of the non-elites (also - and when we say it, let's whisper - FdB is one of the elites).
At least somebody who's been mugged knows where not to walk at night.
Outstanding and eye-opening. I think it’s so important, for those of us with the desire to challenge these increasingly iron-clad norms in even well-meaning places and professions, to have very clear, articulable, and “back-uppable” reasons for doing so. This was that.
My law firm has one of these 14c-type programs. I am not precisely sure what we pay them and we get some government subsidy to do it. Mostly we have them do work that otherwise just wouldn't be done. Like delivering paystubs that of course are also posted electronically. Delivering circulated publications intraday that we could otherwise just have the regular intra-office mail staff do nightly. Sometimes they help the secretaries move old files when it requires a cart or whatever. It's obviously charity on our part, but I think it's money well spent. These plainly are people that are not going to be competing with non-disabled people for full wage or non-subsidized jobs. That's obvious within seconds.
Having a schedule, going to work, interacting with the world - these things have enormous benefit to human sanity. And my best guess is that these types of make-work jobs are an answer, or partial answer, for more people than just those diagnosed as mentally disabled.
My best friend growing up had an uncle on the spectrum. The uncle would often be at my friend's home. Eventually he started in one of these "make work" jobs. He loved it. It was so great for him.
The obvious pride that some of them have in doing their job really chokes me up some days. With others, you can't really tell what they are thinking, but either way, routine is important.
The local hospital near where I grew up had a janitor who was developmentally disabled. He worked hard, showed up every day and was proud to have a job, to be doing something to support himself.
When the fired this poor human as part of a set of cutbacks, people were pissed and raised enough of a stink that the hospital gave him his job back.
Awesome! Just made my night. Thanks.
I really really like to see 14(c) workers. I was a tech in a HP rework facility in the 90s, Pride Industries contracted a lot of very low level labor with 14(c) employees. Most were fairly non-communicative, others were very high functioning. One twenty something kid we had seemed fully functional, yet couldn't add single digit numbers in his head, I mean numbers less than 5. From all outward appearances, personality, sociability, you'd think he's 100% ... For every three or so 14c employees there was a manager to assist the employees.
I then spent 21 years at an Intel plant, where 14c employees performed the janitorial work. These were mostly higher functioning folk, the highest functioning during the day. I worked all shifts and interacted with many across the years. I was glad to see them having something.
I have 2 high functioning adopted children on the spectrum, who were nonverbal until almost 4. Part of being a parent is having hopes and dreams for your child. There is an intense desire to find a "fix". All sorts of professionals claim to know the fix, often giving false hope.
As a paremt of such a child, there is so much concern that one is failing their child.
I am not opposed to parents providing all the help they can to such children, but the best thing I found to do was accepting them and stop hoping that they would be like "normal" kids. Accept their limitations and help them manage their lives.
And if things get better in some area eventually, be happy, even for the small successes.
“has been hijacked by activists who care more about their doctrine than the vulnerable people they ostensibly speak for.”
This is ubiquitous.
The Shirky Principle: “institutions will try to preserve the problem to which they are the solution.”
Fuck activists. The full-time permanent version. Really, I mean it. We need to reverse the positive status juice it derives. Activism in a working democracy is a part time gig… taking time away from a regular productive life to agitate for policy to address a cause. After the voting in done, the agitator needs to go back to her productive life. The activism should not be a career. The activism should not be the cream filling of an otherwise meaningless life. Because if so, it corrupts the mission and intent of the cause. It shifts the focus of importance to protecting the career of the activist and perpetuates the need for it.
Not until “professional activist” becomes an identity label much worse than MAGA will the perpetuation of problems not continue.
Activist to me means: I'm too lazy to actually help out, but I'll carry a sign, make noise, claim success, convince myself I'm helping.
My beautiful and super intelligent niece is about done with her four year undergraduate degree from a known-prestigious school where she she dropped her interest in business and seeks a job in a non-profit where she will "have an impact changing the world". The problem is that she sees the latter as more status-making than the former. She will not be lazy in that role and that is a big part of the problem.
Elon Musk just had a great quote:
“History is written by the victors. Well, yes, but not if your enemies are still alive and have a lot of time on their hands to edit Wikipedia.”
I really think the key is for all of us to stop walking on egg shells around all this ideology of grievance and start pointing out that activism is a sewer profession. This is difficult for example when Hollywood portrays the activist as the hero and the business as the devil. But Hollywood is also a sewer.
Yeah. I’ve often said that these are people who want to save the world and still make happy hour. Fundamentally unserious.
I and many other radicals draw a distinction between activism and organizing. The former is exactly as you describe, while the latter seeks to build power that can solve the problem. The activist wants to draw a paycheck to perpetually raise awareness about poverty, while the organizer builds a union to bargain for higher wages.
The best organizers organize themselves out of a job.
I am very good with organizing and activism for a cause as a project. Projects are defined as a temporary endeavor with a unique goal. Projects end and the project participants return to their functional responsibilities and/or go on to the next project.
One thing that can be done to help with this is that the rules for non-profits involved in politics need to be strengthened. Non-profits that have a mission outside of politics that are found to be involved in politics should have their non-profit status revoked. Non-profits that are approved as political organizations should have to disclose donors and activities and be limited and restricted in that activity.
Let's use the mission of the Sierra Club as an example:
"To practice and promote the responsible use of the earth's ecosystems and resources; To educate and enlist humanity to protect and restore the quality of the natural and human environment; and to use all lawful means to carry out these objectives."
But in the 2019-2020 fiscal year, the Sierra Club gave about $400k to Democrat campaigns and $0 to Republican campaigns... even though many Republicans are committed to environmental causes.
In an annual audit of the Sierra Club, this should be a finding that could risk their non-profit status being revoked as they are acting more as a Democrat party PAC, than an organization focused on its approved mission.
The Sierra Club is a 501(c)(4) organization, deliberately, and every chapter and group will have a political committee that will make endorsements in elections. There is a separate Sierra Club Foundation, which is 501(c)(3), and they are, and need to be, very careful about separating c(3) and c(4) work, to not spend Foundation money on any political or otherwise prohibited work. Chapters and groups will have separate c(4) and c(3) accounts and ensure that only c(3)-qualified activities (e.g. educational) are paid from c(3) funds. The national office has compliance staff that chapters and groups need to get clearance from.
That is fine. But regardless, all 501 (x) non-profits have to get their application approved by the IRS and that application includes a designated mission. Today there is not much scrutiny of mission creep. There needs to be.
This whole essay reminds me of the deaf rights activists calling hearing aids "genocide".
If there's no reason to presume that there's an ordinary "intact mind" somewhere inside each severely disabled person, then why should we presume that ordinary "moral rights" inhere inside of them? Why is it an "ugly moral assumption" to presume that "possession of a typical consciousness" is necessary for the possession of typical ethical claims? In one paragraph, you point out that activists have chosen to believe in an unfalsifiable "intact mind" hypothesis because it allows them to claim "intact rights" for the disabled; but in the very next paragraph, you point out that this is bad because it's harmful to the unfalsifiable "intact ethical rights" hypothesis.
Normal people can admit that individuals should care more about their friends and family than about strangers; that states should care more about upstanding citizens than foreigners and criminals; that employers should care more about the intelligent and hardworking; that pigs deserve better treatment than fish. I know that it's taboo to ask this, but why should I believe that the activists are wrong on this point -- that the lack of "conventional consciousness" implies a lack of the "moral desert" we conventionally grant to conscious beings?
If you were in a car accident and ended up in a vegetative state, I presume you'd want your body to be treated with respect and care by society, not simply left by the side of the road.
And if you were a cow then you'd want factory farming to be more humane. Wow!
I have zero chance of becoming a cow in my lifetime. I have a non-zero chance of suffering an accident which puts me in a vegetative state. Ergo, I have a personal interest in how people in vegetative states are treated.
Feel free to bite the bullet and say that if you end up in a vegetative state, you grant the state full permission to harvest your organs for someone else's use.
I think the state should punish violent criminals. But I could become a violent criminal! Oh no I've been debunked by someone who clearly believes in her moral precepts enough to argue in good faith!
Remember, kids: if you have a personal interest in something, then it becomes a metaphysical right which grants you moral superiority!
I don't understand your point, and your sarcasm isn't helping.
Am I incorrect in my assumption that you would like for your body to be treated with respect and care in the unlikely event you ended up in a vegetative state?
Human beings slaughter cows and pigs. At some point humanity says "Who cares?" with respect to the desires of cows and pigs.
On the other hand just about everyone agrees that even if violent criminals should be locked up their wishes with regards to humane imprisonment should be honored.
Murderers also slaughter humans. At some point, humanity says "who cares?" with respect to their desires to be free. On the other hand, just about everyone agrees that even though we slaughter cows and pigs, we should probably grant them a little more freedom to move than they currently tend to receive.
I don't understand why the existence of a moral boundary in one place would preclude the existence of a moral boundary in another place -- yes, humans regard humans as different from cows and pigs, but that doesn't mean that innocents regard innocents as different from criminals (if anything, it implies that drawing such moral boundaries is normal).
You have a non-zero chance of empathically expanding to care a lot more about animal suffering than you currently do. (We all do, I mean.) The self is flexible, because empathy is. And so you could someday have more self-interest in how cows are treated. Their mistreatment will hurt you, too.
I agree, but I still have zero chance of becoming a cow in my lifetime. While I may one day care far more about the welfare of cows than I currently do, to the point that the existence of abattoirs will deeply upset me, my concern for the welfare of cows will never be based in the self-preservation instinct.
Yet political heroes, and mothers, are often willing to die for those in their circle of care. The object of our instinct for self-preservation can enlargen as the self does.
Certainly not. That’s a health hazard. I would hope they would at least recycle.
Personally, if it’s a persistent vegetative state without a reasonable likelihood of recovery based on best current medical knowledge, I’d just as soon they gave me a shot to stop my heart and harvested anything salvageable. Especially if the alternative is saddling my estate and my spouse with crippling medical debt.
How does the crippling medical debt part work? I'm not aware of any facility that will keep the vegetative alive when funding runs out and care is typically expensive, so expensive that it's almost never individual households that pick up the tab unless they are the recipients of a large legal settlement.
For me, go ahead and keep me plugged in until the wheels fall off.
Google Terri Schiavo
Like I said, keep me plugged in until the wheels fall off. And if the dispute is between my crazy spouse and my parents let it be known that my crazy spouse can go hang.
Pigs still get slaughtered.
And all humans eventually die -- wow, very deep!
Except that if I kill a pig chances are that nothing will happen.
If I shoot somebody in a vegetative state--or rape them--more likely than not there will be consequences.
Responding to everyone who disagrees with you with sneering contempt doesn't suggest that you have a great deal of confidence in your own ability to argue your points.
It's a reflection of my judgment on the quality of the responses -- after all, your first response was "oh yeah well what if you got severely disabled in a painful way, then you'd have an interest in my understanding of moral rights you hypocrite." Bizarre -- often people at least pretend that "moral rights" are somehow different than a nice name for personal interests, & often they at least pretend that they have an argument besides contrived claims of hypothetical hypocrisy against their interlocutors.
It's called Rawls' veil of ignorance.
>hypothetical hypocrisy
The fact that you are still refusing to answer the simple question "would you want your body to be treated with respect and care if you ended up in a vegetative state?" suggests that the hypocrisy isn't "hypothetical" in the slightest, and that you know full well your answer to this question doesn't help your argument.
As I said before, you can totally bite the bullet and say "of course I would want my body to be treated with respect and care if this happened, but I still think the state should euthanise anyone who's in a vegetative state from which they are unlikely to recover". If you were to say something to that effect, I would be more than happy to admit that my assumption of hypocrisy on your part was misplaced.
Oh wow, Rawls had a thought experiment about how souls exist prior to the body -- this means that souls obviously exist prior to the body!
And yes, if I were under suspicion for a serious crime -- whether rightly or wrongly -- then I would obviously want to get off for it, even though I would strongly prefer a much harsher justice system. I just think you'd have to be severely intellectually disabled to be unable to understand this.
Even if there's reason to presume that there's an ordinary "intact mind" somewhere inside each severely disabled person, why should we presume that ordinary "moral rights" inhere inside of them? Or anybody for that matter?
Seems to me the "intact mind" is an IS question, while the "moral rights" is an ought question. There is no inherent conflict accepting one and not the other.
Ugh, my wife has three non-verbal autistic boys in her Kindergarten class this year. She gets 30 mins of extra help a day for it, in the form of a very overworked resource teacher. So those three boys don't get the support they need, and the other 24 kids in her class are basically ignored for most of the day as all her time is spent on the three.
Every single person involved recognizes it as a terrible situation that benefits no one.. But the school board is so convinced that "integrated" classrooms are the way to go that there is no hope of it changing.
It's a lot easier to insist on integrated classrooms if you aren't actually in the classroom dealing with 27 kids who need attention and 3 profoundly disabled kids who need constant support.
I used to think homeschooling was misguided, but I'm running into more and more "regular" folks who are pulling their kids out of public schools and homeschooling. These aren't religious nuts or "unschoolers." For them to make this leap things must be pretty bad in their kids' classrooms--it's a lot of work.
I'm always here for the mental illness posts. I learn a lot every time you write about this.
Trying to think of a practical difference between FC facilitators and spiritual mediums. I have no doubt more of the former genuinely believe in their practice than the latter in theirs, but each is an example, intentional or not, of duping people desperate to believe they can communicate with these loved ones when such a thing is clearly impossible. And I'm sure I'm not the only one who thought of a Ouija board when the letter board "technique" was described.
This is you at your best. Your writing on this topic has introduced me to an issue I knew nothing about and has taught me a lot. When you write that this is your most important political challenge, I tend to agree. It comes across from the passion and thoroughness with which you write.
In this house we believe in science--meaning modern Ouija boards.
"You have an intellectual class, within liberalism, within the Democratic Party, full of people who have never suffered,” deBoer said. “When that’s true… politics becomes a virtue contest. Politics is completely immaterial to [a member of the elite]. You will not suffer if a Republican goes into the White House. It won’t make a difference to you if they cut Medicaid, because you don’t need to be on Medicaid. It won’t make a difference to you if they cut food stamps, because you don’t need food stamps. So politics is permanently immaterial. That is the perfect breeding ground for the kind of politics where you say: ‘If they serve bánh mì in the college cafeteria that’s cultural appropriation.’"
On its own this behavior is merely juvenile and selfish. But what elevates it to the monstrous is when the real suffering of the less fortunate is co-opted in service to that narrative, often to the detriment of the people who are actually doing the suffering.
And it's petty. Whining about "cultural appropriation" completely misses serious racial issues. Nitpicking over pronouns leads to endless petty squabbling and time wasting.
Exactly! I don't understand why so many are taken in by this posturing. What this whole thing has shown me is that there are more fatuous/stupid/gullible people in the world than I had heretofore considered. Or, is it just that people want their illusions to be true so much that they are willing to look past the truth?