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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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?
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.
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.