a brilliant, tragic book
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.
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 love this part:"In addition to being baseless, this attitude reveals an ugly moral assumption. As Lutz notes, insisting that every profoundly autistic person must hold a conventional being inside of them inevitably suggests that possession of a typical consciousness is necessary for that autistic person to be worthy of love and accommodation."
As the proud mother of a trans man, I feel the same way about those who insist "trans women are women" & "trans men are men".
What if they aren't?
Does that mean they don't deserve a life of dignity and compassion?
My son is a trans man, not a man.
He is different from men in profoundly important ways.
In no way does that diminish his value or lovability.
Trans women are trans women, not women.
They are different from women in profoundly important ways.
In no way does that diminish their value or lovability.
The law does autistic people no favors by pretending their "real self" is neurotypical.
The law does trans people no favors by pretending their "real self" is the opposite sex.
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.
I will buy this book.
Also - your book was great, Freddie! Just finished it.
"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.
“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.
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 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.
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
This whole essay reminds me of the deaf rights activists calling hearing aids "genocide".
"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.
A long time ago when I was a young guy, I had a girlfriend who’s brother was mentally disabled. He lived in one of those small group homes that housed 20 or so similar people. She would visit him almost every other day and if I was with her, I’d go along for a visit. I had several eye opening and humbling experiences in my interactions with these mentally disabled people that to this day, I have never forgotten and am forever grateful for the exposure.
One activity that I always remembered and which to relate here was the sheer excitement and joy they took in their job. Their job was pretty basic. It was to replace the foam ear piece adapters on those old school cheapo airline head sets. Work day was two days a week. All who could participate would look forward to the day. Getting ready in the morning. Being bused to the office. (A repurposed old school). Sitting down. Working for a few hours. Lunch. (A business lunch to them!) Then coming back to the home. Some could do dozens. Others it would take an hour just to replace one headset. They were paid like $1.00 per hour. The value of money was meaningless to them. But the notion that they worked, made money, contributed to some cause, were significant in improving their self worth and confidence.
Being part of the real world was important to these people. They were so proud of their participation and would regale me with after work stories about their “day”. They taught me that there is always dignity in work. And don’t let anyone tell you otherwise.
To shut down these “make work” facilities because of insufficient funds to pay min wage totally misses the societal and personal value that these jobs provide to these people. What a shame. And a pox on those do-gooders who are hostages to their ideologies.
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.
"It’s the same attitude that has a generation of young professionals doggedly pursuing diagnoses and then, having secured them, blaring them from the comfort of their affluent lives, helping to further render the concept of disability meaningless."
>The notion of the intact mind also speaks to one of my central frustrations with the whole disability activist community: their absolute inability to ever accept that some things in life are just bad, that tragedy and unhappiness exist and cannot be legislated away.
I am sure that some people will try to strawman this sentence by claiming that Freddie thinks people with some kind of mental illness/disability shouldn't ever be allowed to find any kind of redeeming quality or positive reframing of their conditions, and that they should be depressively consigned to their conditions for the rest of their lives. And look; I get it. The desire of many people in society to shut off and label everyone with some kind of mental illness or disability into a box can be frustrating and isolating. There is no denying that wanting to find some kind of pride/insight into your own identity (as a disabled person or otherwise), to rewrite and reclaim your own story, can provide you some of the power, agency, and self-esteem that has long eluded you. I won't deny in my own life that many disability/mental health communities have appealed to me for that reason; just like other affinity groups around race, gender, political beliefs, and Mario Kart main can and have appealed to others.
But as Freddie says, "This is the same impulse that inspires people on social media to insist, with the sublime confidence of the ignorant, that mental illness never causes anyone to be violent, which is both flagrantly untrue and terribly cruel to the mentally ill." If the effects of mental illness on society extended only to the tips of mentally ill people's fingers and toes, that would be one thing, but mental illness is not pretty, mental illness is not an excuse, and mental illness is not absolution.
Freddie has already been up front about how his own condition has negatively impacted not just his own life, but those of friends and acquaintances. For my part, I've been fortunate that I've never been in a position where I've caused serious physical or reputational harm to anyone with my actions, but there's no getting around it: during some of my moments with depression and anxiety, I was a gigantic prick to a lot of people; said things I shouldn't have; tried to get under people's skin; and undeniably made a lot of people's lives measurably worse off for having known me, and while I've made amends with some of those people to the best of my ability, in others, the damage has been done, and that responsibility is mine alone. Yes, I felt bad afterwards, when I was in my right mind, but anyone who's seen an episode of Bojack Horseman knows full well that being shitty to other people, even if you had a bad childhood and even if you feel bad afterwards and even if you didn't really mean it because you have issues, still means you were shitty to other people.
At the end of the day, if someone fucks up, they have a responsibility- to society and to themselves- to make amends best they can, to be better, and to try not to hurt other fellow human beings in the future. Yes, empathy is good. Yes, understanding and grace is good. And yes, perhaps mentally ill people have more challenges than the neurotypical, and we shouldn't discount that. But for "advocates" to try to demand we short-circuit or paper over that ritual of forgiveness if someone who does wrong happens to mentally ill, no matter how well-intentioned, only serves to sever mentally ill people further away from a society that already despises them.
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.
Thank you Freddie, as always, for your work on this issue. My youngest brother is severely autistic. When I read about/experience some of the ludicrous notions put forth by certain "advocates of the disabled" I often find my anger renders me inarticulate. Your ability to make the case with such eloquence is greatly appreciated.