Review: Chasing the Intact Mind, by Amy Lutz

a brilliant, tragic book

Amy Lutz’s new book Chasing the Intact Mind has, for me, an essential and rare quality: it made me feel less crazy. Its subtitle, How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most, places it directly in my wheelhouse, expressing the concept of the gentrification of disability concisely. Lutz is a scholar who studies issues of disability and related policies, and she’s been on this corner for a long time; not coincidentally, she is also mother to a profoundly autistic son. Her new book is both resolutely academic and crackling with a frustration that builds inside me day after day: the sense that the disability studies/disability rights movement is making things worse for people with disabilities, and doing so armed with overwhelming self-righteousness that chokes the debate. By surveying the world of autism memoirs, the politically-motivated decline in services and programs specifically for the autistic, and the troubling return of a discredited practice, she demonstrates that the cultural conversation about her son’s developmental disorder has been hijacked by activists who care more about their doctrine than the vulnerable people they ostensibly speak for.

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; some profoundly autistic people who are nonverbal may have conventional consciousness that they can’t express, but given the degree of overall impairment such people often have (including issues like an inability to control their bathroom functions, difficulty moving around without assistance, and repetitive self-injury), the insistence that every nonverbal autistic person harbors an intact mind within them is strange and unhelpful. But this attitude is part of what makes Lutz a target of the disability activist crowd, and in fact many people consider the term “nonverbal” inherently bigoted, saying instead “autistic people who choose not to speak.” The evidence that such an active, conscious choice has been made is nonexistent.

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. This is a profoundly odd thing for a movement based on the equal value of “neuroatypicality” to think. And the doctrine of the intact mind is not merely relegated to people with autism but also to those with cerebral palsy (which frequently but not always causes cognitive impairments), serious traumatic brain injuries, and other conditions that are known to impair thinking. All are assumed by many, including those in the disability studies/disability activism sphere, to have conventional minds that they either can’t express or choose not to, underlining the sense that rights and compassion must be deserved through access to cognitive health, a perverse and ugly doctrine. Worse, the notion of the intact mind has been used to justify various kinds of abuse. This thinking led, to pick a notorious example, to the Anna Stubblefield case, where an academic sexually assaulted a man whose cerebral palsy has prevented him from ever speaking and who has been assessed as having the mental abilities of a two or three year old.

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. You can’t just say the word “ableist” until the world capitulates to your sunny, false worldview. It’s sad to think that there are millions of kids out there whose cognitive and developmental disabilities prevent them from having a conventional mind, and sad to think of the millions of parents who are desperate to connect more deeply with their profoundly autistic children. And so the intact mind is simply assumed, and anyone who questions it is labeled a bigot, guilty of “ableism.” 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. It’s the same attitude that has forced me to spend the last half-decade or so of my treatment fending off the idea that my bipolar disorder, which has come close to both ruining and ending my life, is my “superpower.” 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.

Lutz examines various issues that have been impacted by the rise of disability activists and their very particular sense of what’s best for people with disabilities. Core to the problem, in Lutz’s view, is that the disability studies school sees any separate program or facility as inherently segregated and thus pernicious. This has led to the perverse outcome of disability activists shutting down various efforts to better serve the severely disabled under the guise of fighting segregation. Disability studies activists, for example, are in large majorities adamantly opposed to the existence of supportive housing that specifically serves profoundly autistic patients, despite the fact that such housing can be the safest and most nurturing spaces for them. An interesting ethical question concerns 14(c) programs, which have traditionally allowed for those with cognitive and developmental disabilities to work for less than minimum wage in order to experience working life and have more structure in their days. On the one hand, I’m a firm believer in minimum wages that define a certain floor for any kind of work, especially considering that it’s been demonstrated again and again that they do not have the negative effect on hiring that conservatives claim. However, many of the people who have held these 14(c) jobs have reported that they enjoyed doing them, and Lutz cites evidence suggesting that when these programs are shut down, most of the people with disabilities within them don’t transition into regular work (as disability activists insist they will) but instead sit at home.

That’s a complicated political issue, for me, but not for those activists; they can imagine a world where (for example) someone with Down syndrome and an IQ of 60 can work well enough to be worth hiring under conventional capitalist terms, so they insist that that must be the reality. When sad reality and their idealism conflict, they always side with the idealism. And as Lutz demonstrates, they’ve been remarkably effective in getting these programs shut down, shouting about equity and obscuring the perspectives of the people who enjoy participating in these programs and their parents, who have much less social capital and thus less ability to speak. They insist those who take advantage of 14(c) programs are being exploited, despite the fact that only 2% of the employers are for-profit entities and that often 14(c) facilities function more as centers for supervision and community than as actual workplaces. But that itself is part of the activist complaint. “The Disability Rights movement and the allied Neurodiversity Movement are hegemonically opposed to all disability-specific settings - like specialized classrooms and schools, larger residential facilities (such as intentional communities, campuses, and farmsteads), and vocational programs,” writes Lutz. Never mind if those are helpful to the actual population involved.

A not-complicated issue, for me, is guardianship or conservatorship; some people have special needs that require them to be cared for by a committed adult, usually a parent or sibling. That’s reality. And yet the activist class has worked relentlessly to make it harder to establish guardianship over adults with serious cognitive disabilities and eroded the control of those who hold such guardianship positions. (That these changes to law and policy have often happened in the name of Britney Spears, an immensely wealthy woman whose life is nothing like that of the average person living under guardianship, is just one of those little absurdities.) The legal hurdles to establishing guardianship in adulthood, even for parents who have cared for their disabled children for life, have grown, along with the cost of overcoming them. In one awful story, Lutz discusses a seriously-impaired autistic 19-year-old who was enticed to a motel room by a 40-year-old man who had traveled 3,000 miles for the encounter. When his horrified mother called the police, they told her that because she did not have legal guardianship over her adult son, they couldn’t help her. That’s a condition that many are working to make more common, in the name of autonomy for those who are immensely vulnerable to manipulation and abuse. It’s totally senseless to me - but many would prefer to pretend that everyone is capable of living on their own. That’s the happy story, so that’s the story activists tell.

Within the cacophony of modern disability politics, anyone who dares suggest that disability can be tragic or otherwise resists the relentless bright-siding of activists becomes a target. Nowhere is all of this sadder or more destructive than with the resurgence of facilitated communication, which Lutz suggests is making a comeback, aided by disability activist rhetoric.

For the unfamiliar, Lutz presents a concise history of “FC” and its sad history. Facilitated communication is an objectively, repeatedly, comprehensively discredited practice that supposedly enables nonverbal people with autism and a handful of other cognitive disabilities to speak. Though there are various physical techniques, all of facilitated communication involves a “facilitator” physically aiding a given patient’s use of an instrument through which they communicate, such as a keyboard or imageboard or similar tool to produce language. The claim is that these patients have fully intact minds - indeed, a stunning number of children using facilitated communication have been revealed to be geniuses for their age, go figure - but have physical impediments that keep them from using communication tools on their own. Parents, desperate to establish a connection with their disabled children, view facilitated communication as a lifeline, vehemently defend its validity, and have used the reasonable accommodation provisions in the Americans with Disabilities Act to force public school districts to pay for it. Lutz cites research showing that this can cost schools $30,000 a year.

This is particularly problematic given that facilitated communication is a farce. It is a form of fraud through wishful thinking. I have to be adamant about this, we all have to be adamant about this, because as Lutz demonstrates facilitated communication has improbably survived its repeated debunking. Facilitated communication has been conclusively proven not to work again and again and again. Every reputable study has shown that the facilitator, not the nonverbal person, is guiding the communication; the studies that purport to show otherwise are all deeply flawed and seemingly motivated to find a positive outcome. There are several variations of studies, but the most common involves showing both the facilitator and the person they’re helping a series of images, with neither able to see what the other sees. They will alternatively be shown the same images or different images, without either knowing when. And every time there’s a difference between what the facilitator sees and what the nonverbal person who’s supposedly talking sees, the facilitated communication results in repeating what the facilitator sees. Again and again and again, the nonverbal subject of facilitated communication is unable to express what only they would know, while what’s described through the facilitator is that which only the facilitator knows. The rate at which this outcome doesn’t occur, across hundreds and hundreds of test subjects and repetitions, is statistically indistinguishable from zero. If any human research result can be called truly dispositive, the fraudulence of facilitated communication is it.

The whole thing is tragic, touched with an element of dark farce. One previously nonverbal and otherwise comprehensively-disabled autistic patient’s supposed first words through facilitated communication were “I am intelligent!” This sounds nothing like an actual disabled person suddenly finding themselves able to communicate, but does sound exactly like an adult who’s a partisan for facilitated communication subconsciously cosplaying as one. (FC people are generally considered not to be engaged in active deception but instead are well-meaning, stubborn, and unable to understand the ideomotor effect.) Lutz describes an autistic child who communicates by pointing at a letter board. Some autistic people authentically do this without controversy; the trouble starts when someone else is manipulating their hands. This particular child wasn’t guided in that way, and yet their communication proved to be illusory as well - they could only form coherent messages when one of the parents was holding the board that they touched. If the board was placed in a fixed position or held by someone else, nothing they produced made any sense. Yet proponents of FC refuse to acknowledge the obvious implications of such a thing.

This is, of course, all quite sad. The parents who are trying to reach their children through FC could not possibly be more sympathetic. And though I think the huge corpus of research demonstrating that it doesn’t work should convince FC facilitators to drop it, I also understand that many of them are true believers who do what they do out of a sincere desire to help nonverbal kids communicate. Their effect in the world, however, is destructive. There are some people out there who acknowledge that FC is a matter of complex wishful thinking but ask, in effect, what the harm is. There’s the pragmatic and the more philosophical answers to that question. The pragmatic answer is that the subconscious manipulations of facilitators can have very dramatic effects. In FC’s heyday, profoundly autistic children began “accusing” their parents of sexual abuse through their facilitators at astonishing rates. As Lutz documents, dozens and dozens of heretofore nonverbal kids took advantage of their newfound communicative ability by supposedly claiming that they had been molested. Given that FC was still rather rare and the baseline population of profoundly autistic children small, this suggested a rate of parental sexual abuse that was astonishingly high. In order to demonstrate their innocence, many parents who had recently championed FC were forced to challenge its validity, helping inspire the wave of research that debunked it. This must have been excruciating for them.

Speaking to the deeper philosophical sense of why it’s wrong to humor the pleasant fiction of facilitated communication, beyond the fact that we should tell the truth, Lutz is eloquent.

FC is not a parlor game or a research project, but a “pseudoscience” or even a “pathological science” that poses multiple and significant risks to an extraordinarily vulnerable population. The worst harm isn’t the false abuse allegations that have resulted in users being removed from their families, or even the very real abuse has been justified with FC…. Nor is the worst harm the expense - although it is tremendous, in both dollars and time…. No, the worst harm of all is that FC hijacks the (albeit limited and very fragile) agency of profoundly disabled individuals…. Ultimately, it’s this unwitting ventriloquism that marks FC not only as bad practice but, more fundamentally, an abuse of human rights.

If you’d like to get a sense of the destruction facilitated communication is capable of, you might consider Gigi Jordan. While practicing FC with her 8-year-old nonverbal son, “he” “told” her that he wanted to die, and she obliged by feeding him pills until he died. She later suffocated herself to death before she could be jailed. Is that extreme and a vestige of much deeper problems with that particular woman? Sure. But it also speaks to the profound danger of allowing people to substitute their own subconscious voice for that of someone with a serious disability. Facilitated communication is a dangerous fraud that must be opposed. But to oppose it, we have to have the courage to stand up to people who think that they can throw the word “ableist” around and get whatever they want. I invite you to join me in saying without apology that, however great the pain of parents of profoundly autistic children, humoring the fantasy that facilitated communication represents is not the solution. There can be no ambiguity: facilitated communication does not work. And not a single dime of taxpayer money should be spent on discredited, destructive pseudoscience.

Lutz’s book is, as I said, academic. I think many readers who aren’t used to academic publishing will find the going a little slow, even for a slight book at 130 pages. This is necessary, however, for Lutz to carefully go through the evidence she brings to bear, particularly in her patient work looking at how the memoirs written by the parents of autistic children helped to cement the “intact mind” attitude into public consciousness. And the whole book is suffused with sadness, a mother’s sadness and an advocate’s sadness. Lutz has taken a great deal of heat in her career, from predictable sources. I can’t imagine that she wants to be known as an enemy of the disability rights movement, and I’m guessing she would much rather simply advocate for disabled people like her son. Personally, I’m very happy to have this fight, and increasingly I think opposing disability rights activists and all of the perverse consequences of their work is my most important political challenge. In that effort, I’m lucky to enjoy the benefit of the wisdom and guidance of Lutz’s new book.