Tensions are running high around the case of Anna Stubblefield, the Rutgers-Newark philosophy professor convicted of sexually assaulting a disabled man. This post is a – no doubt inadequate – attempt to explain some of the complexities involved, and also an attempt to explain why those of us (like me) who think there’s very damning evidence that Stubblefield committed sexual assault and should absolutely go to jail nevertheless find so many of the issues here tricky and complicated, and find the whole thing almost unbearably sad.
- ‘Mental age’ – The subject of assigning ‘mental age’ to cognitively disabled adults is deeply controversial within the disability rights community. This blog post gives a good outline of the main points of contention. This post gives a first-person narrative of why the idea of ‘mental age’ can be so offensive, and links the writings of various non-verbal autistic persons who, prior to having access to the technology which has allowed them to express themselves, were thought to have the ‘mental age’ of children. ‘Mental age’ is simply meant to assess specific aspects of cognitive function, but too often when we say that someone, e.g., ‘has a mental age of 13’ we assume that they are basically a permanent 13-year-old. This kind of slide has shown up over and over again in the reporting on the Stubblefield case.
- Communication and cognitive disability – There are many very sad cases of cognitively disabled people being denied access to the communication methods and communicative technology they need. And this lack of access has contributed to incorrect assumptions of incompetence and lack of awareness, especially for autistic people (see above). So in the disability community there’s both skepticism about mental age assessment and a deep desire for better communicative technologies.
- Facilitated communication – Enter facilitated communication, which is purported to be a method of communication for cognitively disabled persons whereby they can communicate with others via the help of a ‘facilitator’ who helps them to point to letters or symbols on a keyboard or other communication device. And it would be wonderful if this method of communication works. But the overwhelming scientific consensus is that it doesn’t (at all). And there’s also substantial evidence that the facilitator influences the result, sometimes to terrible consequences.
- Sexual abuse and cognitive disability – Disabled people are, in general, very vulnerable to sexual abuse, and evidence suggests that cognitively disabled people are especially vulnerable. Abuse often comes from caregivers or those with assistive roles in the person’s life.
- Sexual desire and cognitive disability – On the flip side, we tend to forget that adults with cognitive disability very often have sexual needs and urges. The language of ‘mental age’ no doubt contributes to this. A 10-year-old doesn’t have sexual needs. An adult with a so-called ‘mental age of 10’ certainly can.
- Consent and cognitive disability – Meaningful consent is a necessary condition of non-abusive sex. But how on earth do we determine meaningful consent in the case of cognitive disability? This is an incredibly difficult issue, with the twin specters of sexual abuse and infantilization looming on either side. And it’s an issue that, personally, I have no idea how to think about.
I don’t believe Anna Stubblefield had meaningful consent – I don’t think there’s any way facilitated communication could have provided her with meaningful consent. And Anna Stubblefield worked with DJ in a professional capacity, as his communicator. That’s enough for me to think that what she did was horrifically abusive, whatever her intentions or beliefs may have been. And I also think that her gender, her victim’s gender, and her self-identification as a feminist are coloring many people’s reaction to the case. (If she was a man and DJ was a woman, I think the reaction would be very different.) But such an ugly coalescence of all these incredibly fraught, painful issues is also just incredibly sad.
40 thoughts on “An epic shitshow: disability, communication, and Anna Stubblefield”
thank you for this nice analysis of the complexities involved in this case. Like you, I have no idea how to think about the last issue, consent and cognitive disability. I keep thinking that there is something deeply wrong in our notion of consent if it makes many people (those classified as cognitively disabled) unable to have sex without involving someone else committing abuse. It is not a matter of infantilizing them, but of completely neglecting them in important ways. I have, however, no idea how to recognize and allow for a sexual life of those who are specially vulnerable to abuse.
Mental age is nonsense when you’re dealing with disabilities that are piecemeal. The reality is that nearly everyone with autism is going to have certain deficits, along with several areas that either meet typical developmental milestones or surpass them. Any kind of across-the-board test or conclusion is going to smooth over what’s by its very nature a much more complex situation. There are ways that my fourteen-year-old is a typical teenager and many ways that his maturity is much more like his seven-year-old sister’s or even less. Trying to assign moral categories to that is tremendously difficult, especially when we don’t have a lot of agreement about what morality consists of. See, for example, the disagreement between Kantians and the Stoics (on one side) and Aristotle and Augustine (on the other) over how emotions, and therefore one of the common deficits with autism, empathy, are connected with moral agency. (And that’s not even counting Hume, whose view I consider a non-starter but is nonetheless fairly popular among contemporary philosophers.)
I’ve said this before several times in discussions about this, but discussions of a monolithic technique called facilitated communication are also oversimplifying. The 80s-90s style method of holding someone’s arm as they type is incredibly unreliable and should never be taken as evidence of anything, but there are newer methods of people doing this sort of thing that remove all the ways that the person can influence the person communicating. They merely place their hand behind the person’s elbow or shoulder and don’t ever push forward. They just allow the person to push back. And there are those who simply teach people to type when they can’t talk, and they’re not guiding their hand at all. They did that with my thirteen-year-old when he was in second grade, and it brought out language we’d never seen from him before. It’s under the category of facilitated communication, but no one was touching anything on his body. He now writes all manner of sentences that you’d never get him saying out loud, and he independently searches for stuff online all the time in YouTube or Google, and there’s no arguing that anyone is guiding him along. But it started with a facilitator helping him to express himself by giving him a keyboard and teaching how to use it. People will carry devices with them to type on and use them for conversation without anyone helping them, and they call it facilitated communication. If Stubblefied was using the first method, then it doesn’t count as clear expression of the person’s intent, but I’ve never seen anyone writing about this making that distinction.
As an FYI, Stubblefield herself described facilitated communication in a manner consistent with the first kind of facilitated communication you mention, Jeremy, in a published article. Here’s the description she gave:
“The facilitator supports the FC user by providing him with an adequately stable and supportive seating arrangement; physically assisting or physically or verbally cueing the FC user to maintain a balanced, upright posture; gently restraining the FC user from performing unintended and dysfunctional movements like arm jerks or grabbing; and assisting the FC user to reposition his arm and hand in a neutral position above the keyboard after a jerk or grab has occurred. The facilitator uses verbal or touch cueing as necessary to help the FC user initiate movement. As the FC user moves his finger toward the key he wants, the facilitator provides resistance at the hand, wrist, forearm, or elbow. This helps the FC user to keep track of the location of his arm, hand, and finger; prevents dysfunctional lateral motion; and slows down impulsive movements (Crossley 1994; “Movement Issues” (CandLE website)).”
(And thanks, magical, for this post.)
That kind of facilitated communication, then, is clearly not the kind that’s been debunked. Providing back support for someone to push against is not going to give any room for unconsciously guiding the person to any particular keys, the way they used to do. So I think that part of the argument is overblown. The methods she was using were fine. There’s still a question of whether the person communicating understood what he was saying and whether her previous role as a facilitator undermines the consent if there was any to begin with, but I don’t think the argument can rest on the fact that it was facilitated communication.
re: 2– “And that’s not even counting Hume, whose views are utterly misunderstood by most, and willfully misinterpreted by some, but of course, entirely correct.”
fixed that for ya.
and now back to the serious matter at issue.
I’d like to avoid turning this thread into a discussion of the merits – or lack thereof – of facilitated communication. I encourage anyone who’s interested to go and look at the current research.
Jeremy, that sounds like substantially more than providing back support (there’s also discussion of facilitated communication from the 90s that appears to be framing it in a positive light, if that provides you with additional context).
Whoops! Sorry magical. I posted my comment at the same time as you. Feel free to remove it if you’d like.
No need! And I agree completely.
I appreciate you not wanting this thread turning into a discussion of the merits of facilitated communication. I think it important to point out that Jeremy is entirely inaccurate in his portrayal of facilitated communication. In fact, some variations do not include physical touch (e.g. rapid prompting method). In any case, nuanced cues emanate from facilitators. Simple studies have repeatedly revealed facilitators author the messages, albeit usually without realizing it. Please do read the empirical literature, but also read about the I deomotor effect.
It’s unclear why hypothetical examples of “mental age of 13” and “mental age of 10” are being used to discuss the Stubblefield case.
“[DJ’s] brother, Richard, and his mother, Jane…say 32-year-old [DJ] suffers from ‘severe mental retardation and cerebral palsy’ and has the mental capacity of ‘an 18-month-old infant.'”
“‘My final opinion, essentially the bottom line, was that he was not competent to give consent to sexual activity,'” [Dr.] Fulford testified. ‘It’s a question of does he have the understanding to consent to it.'”
There might be “incredibly fraught” issues concerning sexual desire, severe cognitive disability, and “meaningful consent.” But once it’s declared that “Meaningful consent is a necessary condition of non-abusive sex,” there would seem little room left for that triad being fraught on any reasonable grounds.
Perhaps the fundamentally fraught issue in a Stubblefield-type case is whether meaningful consent always and necessarily is a condition of non-abusive sex or, at least, sex that does no substantial harm. (Compare this recent case: http://www.washingtonpost.com/news/morning-mix/wp/2015/04/07/in-an-iowa-courtroom-an-astonishing-case-of-sex-and-alzheimers/ .) But no one (openly) seems willing to go there.
Anon, I wasn’t using those mental age examples to discuss the Stubblefield case specifically. They are hypothetical examples to make the general point of why ‘mental age’ talk is complicated, especially when it comes to sex and sexual consent. That’s pretty clear in the post. Fwiw, I picked those numbers because they’re the kind of numbers you often see in discussions of sexual consent for, e.g., people down Downs Syndrome or autism.
For the more general issue of whether there could ever possibly be meaningful consent for someone like DJ (to be very clear, I don’t think there was in the Stubblefield case!), as I said I don’t know how to think about this. It’s complicated and hard, and it isn’t at all obvious to me that consent in such cases is fundamentally impossible. (The fact that some experts say it is doesn’t settle the case for me – the experts have a history of being wrong when it comes to what people with cognitive disability are capable of, and I don’t know how they’re thinking about consent.) But I also think there’s a difficult question of whether how we standardly think about sex and meaningful consent is even applicable in these kinds of cases. So if that counts as ‘going there’, then sure – let’s go there.
I applaud magicalersatz for posting, given how fraught the issues involved are. That’s one reason (the other being too much to do!) that I haven’t done a similar post at the D&D blog. There are not only philosophical issues involved, but also lots of empirical ones, and I know I’m not in a position to comment on the latter in the present case. But I also think that the empirical, contingent facts about particular cases should shape how the discussion goes about the philosophical issues, especially when, as in the Stubblefield case, the two are very intertwined.
Even setting aside FC, the first two bullets of the original post are really important and intertwined (mental age and communication in cognitive disability), as are the last two (sexual desire and consent).
Comment 13 is good as a starting point for how some of these conversations need to go.
Something that has bothered me about the case, from a disability rights perspective, has been the way a lot of the coverage has assumed that DJ’s family are necessarily his best advocates. They may well be, I don’t know. But people with very involved disabilities are often very dependent on familial care and advocacy, which can be amazing but the default assumption that family members know best is something that disabled people have had good reason to contest. From what I have read, DJ’s family at one point wanted to sue Rutgers for quite a lot of money — because Stubblefield’s work with DJ hadn’t been vetted by the university human subjects process, that suit did not go anywhere.
If, as seems clear, FC does not work in the way Stubblefield assumed it did (ie, “DJ is articulating complex thoughts about his life, his disability, his sentiments toward me”) that doesn’t mean it was meaningless in the way the court case assumed it was. What if DJ did like Stubblefield, liked being with her, and found that being sexual with her felt really good to his adult body? The FC could have taken the form of “I like this person. I can see that this or that choice pleases her, I will make those choices”. Those choices were not, in Stubblefield’s interpretation of them, about “I like pleasing Anna” but “I actively pick the word “politics” or “love” or “yes let’s go to a conference” (I don’t know exactly how FC works). The suggestion was coming from Stubblefield, but intent was coming from DJ.
She was deluded about the nature of DJ’s intentionality, so that she thought she was working with a colleague, so that she didn’t think of herself as “his communicator” with all the caveats that would imply. But that doesn’t mean DJ was not forming intentions and acting on them, either.
Of course this is tricky — sexually abused children can form intent, and that intent often takes the form of wishing to please an abuser. That doesn’t mean children meaningfully consent to sexual abuse. But cognitively disabled adults are not children.
The family’s insistence that DJ is essentially incapable of intent, and thus consent, might be right. But the way DJ’s potential intentionality has gotten kind of disappeared into “the family says x” seems to me unfortunate, in terms of what kind of lessons might be taken away by a public that does not think much about disability issues either way.
Since so many of DJ’s intentions require the intervention of others to be realized, the way the coverage has been “the family of the person with the cognitive disability says x thus x is true” seems to me troublesome (though, again, it might be absolutely right in this case).
Yes, there are so many difficult, tangled issues involved in the case. I have a close family member who works in advocacy for people with profound intellectual disabilities, and one of her endless frustrations is families who assume false or misleading things about their intellectually disabled children. Sometimes it’s just trying to deal with parents who are convinced vaccines have something to do with their child’s condition. But the more difficult cases are those in which the parents’ assumptions about what the child can do (or can/can’t understand) conflict with the best current research in educational psychology. But, of course, no one knows the child quite the parents do. . .So it’s difficult.
On the flip side, I’ve been distressed at the way in which those defending AS seem to think her good intentions or what she believed – possibly even combined with DJ’s potential desires – are somehow exculpating. (Not that you were suggesting this, Kathleen, I’m just rambling a little.) People – especially women – who sexually abuse those who can’t give meaningful consent very often feel that their actions are justified, that they’re doing it out of ‘love’, that the desires of their victim are being respected, etc. (We see this narrative all the time in cases where women are convicted of statutory rape, for example.) But none of these are excuses, and none of them make abuse any less abusive.
And another thing that’s concerning about this case is that *even if* we thought that DJ could give meaningful consent and *even if* he really did desire sexual interaction with AS, she was still offering assistive services to him and *by her own lights* was someone he was reliant on for communication. That creates a clear and obvious power dynamic that makes true consent (cognitive ability and possibly of communication notwithstanding) difficult, maybe even impossible, to establish. And that point is particularly pressing when you consider how common it is for disabled people to be abused by caregivers.
This case is so difficult to talk about. In part, no doubt, that’s because it’s difficult to simultaneously criticize the disturbing ways in which agency and sexuality in cognitively disabled people are being treated *and* express full horror at the abuse that’s taken place. But both responses seem apt, to me at least.
Yeah, you are for sure right about the “but I am loving and caring ergo I cannot be abusive” dynamic in cases of women raping boys & abuse generally in caregiving relationships, and both of those dynamics seem clearly relevant here.
I’ve seen it done with the facilitator standing completely behind the person, and all they’re doing is providing back support. The person even went on to do some of it without the facilitator, which is the goal of the whole process to begin with. They moved my son to that very quickly when he was still in second grade, and I saw a guy who had been facilitated and was transitioning to doing it with his own device without the support once he got to college, and he would even read the words out loud as he was typing them, but he couldn’t talk without the additional movement of typing, so it was opening up brain pathways that weren’t otherwise operating. They called this facilitated communication.
So it’s just not accurate to say that the term is universally used for the kinds of cases where facilitators are influencing the content. Anyone claiming that the guy I watched do it had no idea what he was typing could be easily refuted. That kind of mindset assumes incompetence on the part of the communicator, and that’s not what we need for people with autism who struggle to communicate. I’m amazed at how resistant people here are to the idea that someone who doesn’t talk might still be thinking on a higher level and able to communicate with a keyboard. It’s right to be skeptical of some of the methods that have fallen under this label, but that doesn’t mean that all the people doing things they call facilitated communication are doing the suspect stuff.
I know there are sometimes court appointed child advocates in cases where the patents might be biased. Is there ever anything like that for cases like this? Obviously the court doesn’t rely on the accused’s assessment of DJ’s intentions. But maybe it shouldn’t necessarily rely on the family’s either. Was there something like an “appropriate adult” assigned to be DJ’s advocate, independent of his family?
I just want to follow-up on Jeremy’s comment to say that I think there’s a difference between people being resistant to the facilitated communication (of the kind at issue in this case) and people being resistant to the idea that people who cannot speak are thinking on a higher level and might be able to communicate with the use of a keyboard. I *readily* believe the latter, but nonetheless am resistant to the former (actually, I don’t particularly care for the description of ‘resistant’; I think I have formed beliefs about this on the basis of good evidence and reasons, but in any case).
Quick moderating note to the commenter who didn’t have a comment approved and then sent in a follow-up asking why, one of the FP bloggers had replied email.
One final thing. Although I don’t come to the same conclusion, that Anna deserves jailtime, I think magicalersatz makes many good points–especially the ones about mental age and sex and consent for disabled people. And I appreciate the anguish–anguish is certainly what I feel. We definitely share that.
The problem is that people doing both of those things are calling them facilitated communication.
I can’t help but remark again on Jeremy’s ill-informed persistence about FC. First, I am not philosopher and I rarely dabble in such things; my expertise is in the education and treatment of children with autism and other developmental disabilities. I have published papers on FC and its variants, including “rapid prompting method.” I don’t offer this as an appeal to authority; merely to represent the differences in expertise. I find it deeply troubling that a person without any formal training in such matters continues to proclaim, with an astounding degree of confidence mind you, that FC works.
I’m not sure what else to say other than FC has been thoroughly debunked; variations of “support” are nonsense. The location of the touch/support is irrelevant. As I mentioned previously, ideomotor effect can occur without physical touch (see the story of Clever Hans, the intelligent horse, for an interesting historical example, or check out the highly compelling but equally bogus “rapid prompting method). Jeremy is clearly operating outside the area of his expertise, which usually serves to indicate extraordinary hubris for an academic. Perhaps his association with Syracuse (the “home” of FC) has something to do with this, although personal testimony appears quite relevant.
Lastly, I’d like to point out to all the numerous fallacies Jeremy has offered in defense of FC including special pleading, appeal to anecdote, hasty generalization, and ad hominem. This alone is sufficient for dismissing the argument, but the anti-scientific attitude also merits dismissal. Without evidence and exclusive reliance on fallacy, one has not engaged in debate. The debate over FC is settled.
I guess one question I have is where one might go to find literature that is both: a.) knowledgeable of, and respectful of, disability rights movements; and b.) willing to openly and honestly engage with the scientific consensus on facilitated communication, which seems to be that it is total pseudo-science. I’ve seen lots of literature that is dismissive of both facilitated communication and disability rights movements. I’ve seen lots of literature that is both sympathetic to disability rights and dismissive toward what appears to be good science.
I’m sure the lit I’m calling for is probably out there, but I don’t know where to find it.
Re: 5 – “The methods she was using were fine.”
Jeremy, setting aside whether the term ‘facilitated communication’ ordinarily refers to instances involving little to no physical contact (e.g., merely providing back support), please note that that is *not* what was going on in the Stubblefield case. If you check some of the coverage you can see pictures of her on the stand “demonstrating how she put her hand around the alleged victim DJ’s hand to help him communicate.” http://www.nj.com/essex/index.ssf/2015/10/professor_found_guilty_of_sexually_assaulting_disa.html
Matt (@25), I’m not particularly familiar with the literature on this topic, but this article strikes me as an excellent place to start, and in my opinion strikes a really nice tone – emphasizing that communication and advocacy are incredibly important for disabled people, but also emphasizing that pseudoscience isn’t going to help anyone (even if it’s done with good intentions). It puts the focus back on communication methods that might more plausibly make real progress:
Click to access 195.full.pdf
And one of the authors (Jason Travers) has been commenting here! Jason, if you’ve got further recommendations I’d love to hear them.
As many people here perhaps know, there is a significant literature on sex, consent and persons with disabilities. I haven’t looked much at what is for me a completely unexplored literature, but I did find the following article to be sensitive to some issues thhat are important and painful.
ALL HIS SEXLESS PATIENTS”: PERSONS WITH MENTAL DISABILITIES AND THE COMPETENCE TO HAVE SEX.
Authors: Perlin, Michael L., Lynch, Alison J.
Source: Washington Law Review. Jun2014, Vol. 89 Issue 2, p257-300. 44p.
I appreciate the interest in the validity of FC. I’m currently working on a paper that further contrasts a validated protocol for teaching authentic communication (known as Picture Exchange Communication System, or PECS) with facilitated communication. The aim is to illustrate further why FC is not a valid means is teaching communication skills.
I have also authored papers and book chapters on comprehensive sexuality education of children, adolescents, and adults with autism and other developmental disabilities. The issue of consent is a difficult one because of complications related to promoting and supporting autonomy, agency, and sexual expression. Given sexual expression is fundamental to the human experience, I’ve argued that supporting healthy sexual development, behavior, and identity must be a part of special education and other service agencies. However, there are complex ethical and legal issues to account for, including privacy, safety, and support types, and support levels.
Unfortunately some individuals have disabilities that effectively inhibit sexual development and expression (e.g. paralysis that prevents sexual behavior; cognitive impairment that prevents consent to support sexual behavior such as masturbation or, as the case with Stubblefield, consent for interpersonal sexual behavior). Some members of disability-related communities refuse to accept intellectual disability (and other disabilities) as an actual condition; they argue it merely is a manifestation of socially constructed (and oppressive) systems. Frankly, I find the argument bizarre and reflective of poor understanding of the genetic, physiological, biological, and environmental conditions that give rise to various disabling conditions. Social constructionist arguments also give way to notions that education and treatment are negative things because they begin with assumptions the person needs fixing. I find the condemnation of education and treatment from the disability studies community both irrational and self-contradictory to its goals of social justice, but I digress.
The issues with Stubblefield and her supporters includes (a) inability to admit FC is bogus, (b) the conflation between authentic communication that can lend to informed decision-making and synthetic “communication” tactics that cannot, (c) the ethical and legal difficulty related to determining whether an individual has the cognitive capacity to make an informed decision about interpersonal sexual behavior (such as mutual masturbation or intercourse), and (d) the type and level of support to provide in order to achieve meaningful self-expression of a person with a disability. In Stubblefield’s case, a bogus method was used to obtain consent from a man who was legally determined unable to provide it.
Stubblefield clearly violated basic ethical precepts (as stated by others here and elsewhere) and engaged directly in sexual behavior with her “client” rather than acting to provide appropriate supports (which only would have been appropriate if authentic communication skills were present, DJ was legally allowed to provide consent, and she was not acting as a support provider). The notion that she was in love [comment edited to comply with comments policy] does not discount the relevance of any of the aforementioned issues. But they remain unaddressed by the at-large disability studies community. Indeed, it has proven difficult to find any conversation from the disability studies community about these issues. I presume this either is a reflection of admission (that FC is bogus and that Stubblefield engaged in criminal behavior) or an attempt to ignore this train wreck. Responses have instead focused on topics like the one in this thread (which is interesting) or the language used by the media to describe DJ (which was rather disturbing) or to condemn the prosecution for doing such an effective job arguing the case.
Perhaps disability studies leaders will respond collectively to the matter in the form of an article, white paper, or official statement. I’m not sure what they will say or what ought to be said, except that they should condemn the use of facilitated communcation and the increasingly prevalent narratives that come from this dangerous nonsense. Otherwise, it might expect further damaging itself as a field of scholarship and undermining its noble goals.
Thanks for your comment, Jason.
I’m not sure it’s helpful to talk about disability studies in such general terms (what people in disability studies think, what their reaction is, etc) given how heterogenous and gerrymandered a group gets the label ‘disability studies’. That being said, I’ve also sometimes felt the frustration with the way in which, in some corners of disability studies, it at times seems almost verboten to talk about the physical/psychological/medical dimensions of some disabilities. Emphasizing the social and political nature of disability is incredibly important, as is highlighting the way in which disabled people’s experiences have been overly medicalized. But I’ve sometimes encountered a slide from that to the idea that we somehow can’t talk about the physical reality of many disabled people’s lived experiences without thereby medicalizing them. And that just seems strange. Talking about the physical reality of disability (or impairment, if you prefer) needn’t come at the expense of paying attention to its social and political aspects.
But I’ve also encountered plenty of work in disability studies that emphasizes the physical, embodied nature of disability. Disability studies is a broad church!
Mr. Travers the spirit of your remarks about disability studies are very much in line with 90s era jeremiads about how silly postmodernists don’t even believe in reality and perennial laments about how feminists might have a point if only they didn’t carry it so far. I also think your disagreements with Jeremy Pierce have been phrased in unnecessarily insulting terms. I’m actually finding your position less and less persuasive each time you post.
I have to say that I am worried about consent. I think that British law, from what I am reading, takes consent in the case of severe mental disability to have to do with the ability to keep oneself relatively safe, though not risk free. It is also balanced by the realization that sexual relations can be a source of happiness to which one has a right. Thus a severely disabled woman who can get pregnant can’t consent if she has no idea of any connection between sex and pregnancy, but that lack can be compensated for by the implatation of an anti-pregnancy device. The following seemed very humane to me:
(I’ll get the source of the quote later. My ipad disapproves of leaving wordpress unless one is happy to lose all one has written.)
Thank you Kathleen. Jason, I am a great believer of most all things scientific, as befits a philosopher; but when it comes to mental disability, scientific evidence and expertise has often enough been exposed as a high falutin form of prejudice and I remain skeptical until the science gets better and the experts come to see themselves as fallible. I have no problem believing that intellectual disability exists, but I don’t believe that because a presumed expert proclaims with certainty that someone is definitely incapable, that the person certainly is incapable. The experts have been wrong often enough that the best anyone can say is that they BELIEVE thus and thus.
Kathleen, don’t dismiss everything he’s saying just because he’s throwing around fallacy terms without bothering to show that I’ve actually committed them. I suspect the reason he thinks I’ve committed those fallacies is that he thinks I’m defending a view that I’m not. If I were defending Stubblefield or FC with the things I’ve said, what I’ve said wouldn’t support that, and it would indeed be fallacious, so I kind of have to give him credit for making accurate claims about what I would have been doing if I’d been arguing for what I expect he thinks I’m arguing for. I’ll give him no credit for understanding what I’m actually doing, though, because my first comment made it clear that I’m skeptical about FC and have not had enough understanding of the Stubblefield case to comment on it.
Look at Jason’s paper, linked to above. He distinguishes between facilitated communication and augmentative communication. The best way to clear up what’s going on here is to see that the thing he’s calling augmentative communication is what he and I both agree is perfectly fine, and the thing he’s calling facilitated communication is the thing we both think is totally unreliable as a means of receiving genuine communication. What I’m saying is that some people who use AC call it FC. I didn’t know which was going on in this case, because I’ve seen people who use what Jason calls AC calling it FC, and I wanted to know which was going on, so I posted a comment saying not to be hasty without knowing which it was.
Look up Jamie Burke. Googling his name with a keyword or two about these issues should get you to his site. He grew up in a facilitated communication program and learned to type independently. His website has videos showing him being facilitated when he was younger. You can also see him typing independently now, and he speaks as he types. He’s even getting to a point where he can sometimes speak short sentences or phrases without typing. He’s exactly the sort of case Jason’s paper denies. He doesn’t think FC has ever produced an independent communicator, but it has. Jamie is one such person. I have no idea how many others there are. It may be very few or even none. I know someone who came out of the same FC program whose supposed writing I am extremely suspicious of. It’s someone with no formal higher education, but the essays read like they were written by someone with a psychology degree. I’ve read enough freshman papers to be extremely suspicious of that. I don’t know Jamie as well as that other guy, who I see almost every week. I met Jamie once, but he convinced me that he’s communicating, even though I’ve been very suspicious of FC. They were calling what he was doing FC, so I made the distinction that Jason makes in his paper without having the terminology that he uses for it. I then made the same distinction in the first comment I left here and got pounced on for it as if making a distinction is special pleading, but I do note that Jason makes the same distinction and then says the same thing about the two things being distinguished, one worth pursuing as good communication and the other rejected as discredited.
I’m not making generalizations about FC, and I never did above. I’ve met Jamie, and I’ve seen him communicate. Nothing was going on in his case that remotely resembled FC. They did demonstrate a back support technique to show him able to push back with his elbow against a person’s arm to help him have physical feedback while typing, but he was able to type without that and was clearly saying what he was typing, so it’s not what Jason calls FC. It’s what he calls AC. It was obviously genuine communication. All I was saying in my initial comment is that some people call that FC (Jamie does on his website, and so does the Syracuse program), and yet it’s not what the critics of FC have a problem with. So I wanted to get clear on which technique it was. The only things Jason and I really are disagreeing about are (1) the empirically verifiable fact that some people are calling AC by the FC term, which Jamie does on his website, as does the Syracuse program he references, a program whose FC side I am extremely skeptical of and with which I have no connection other than having been at one presentation an AC professor there did involving Jamie, and (2) Jason’s claim that no one using FC has gone on to engage in genuine communication, which I think there’s at least one clear counterexample to. What I’m basically saying is largely in agreement with what he’s on record saying, though. I think he’s just not seeing that for whatever reason.
To all the many people submitting comments on this post linking to the NY Times article ‘The Curious Case of Anna Stubblefield’, there’s a separate blog post here devoted entirely to linking to that article.
First off, I have next to no expertise in disability studies, neuroscience, education, or on FC, AC and related methods. I’d just like to point out two aspects of the Stubblefield case and the present discussion thereof that strike me as very odd indeed.
On the one, if the cited scientific consensus says that communicators/clients are unsuccessful in communicating by way of or as a result of FC *in all cases*, then any single counter-example suffices to refute said consensus. It seems (though I’m not entirely sure) that dismissing counter-examples as ‘anecdotal’ opens at least a slippery slope to dismissing qualitative research methods tout court, which would be unscientific par excellence.
If, however, the cited scientific consensus says that communicators/clients are unsuccessful in communicating by way of or as a result of FC *in most cases*, then the communicative success or failure between DJ and AS would not just merit but require individual examination (thus leaving the burden of proof for actual rather than presumed communicative failure firmly on the prosecution). Such individual examination, crucially, has been made practically impossible in the Stubblefield trial by the judge’s decision to disallow demonstrations of FC as evidence. Given this, I’m not sure either way as to whether Stubblefield’s trial satisfied basic standards of fairness.
On the other, there might be a prima facie plausible explanation for part of the prevalent failure of FC in controlled trials, which to my knowledge has not been accounted for. (Again though, I may just be demonstrating my ignorance of the relevant neuroscientific research.) It seems possible that communicators/clients tend to feel more comfortable working with some facilitators and less with others. Plausibly, they may tend to feel more comfortable with facilitators familiar to them. It further seems possible that their personal level of comfort with a facilitator may affect their level of motor control. If this was the case, then FC would seem likely to be unsuccessful in thoroughly controlled trials, which would in turn place a sizeable question-mark over the cited scientific consensus, as well as over the appropriateness of the judge’s decision, based on that consensus, to disallow demonstrations of FC as evidence.
Everyone in this case lost. No one benefitted, not even the prosecution’s star anti-FC witness who really came across as nowhere near as scientific as he thinks he is.
When I have seen FC in use, whether or not I or anyone else believes it, the connection between the 2 people is fascinating. Sometimes their connection is relaxed and smooth and the typist’s tics and anxiety seem to melt away. With other typists the effort to type is so obvious, they gather themselves to begin, almost holding their breath, they tremble over the keys and sometimes sweat drips on the keyboard. When they pause, they exhale and relax, and then gather themselves for the next phrase. In other words, they look just like me. Except I trap my arms against a table and type with my right pinky instead of someone touching me to steady my arm and hold my pinky out of the the way so I can type with my index finger. Maybe I should try FC. It might be a way to avoid the calluses and blisters I get on my forearms and under my breasts from leaning and rubbing so hard against the table edge. I’ve got friends who bungie cord their own arms down. Maybe I should try rubber-banding my pinky out of the way?
The people who believe FC is NEVER valid explain that the people who started with FC and now type independently would have “eventually” learned to type anyway. How do they know that? Can we replicate that outcome? How long is “eventually”? How long does it take to make the switch from FC to independent vs without that particular pre-independent typing practice? Does that mean if someone used FC for 2 years before they went independent, that FC is a failure? What if they tried other “approved” AAC off and on for years before that to no avail? One huge difference between most FC facilitators and most “professional” AAC helpers, those reimbursed by insurance or government plan, is time. Working with people with no or unusual speech is very very very very slow. And, insurance rations “therapy” not only how long but how often and for how many sessions. I’ve had great speech therapy that always ends too soon and then I have to wait until I can justify some “change” that requires another new set of sessions. If FC helps people move to independent typing faster than “eventually” is that not worth it? Can we predict who would benefit this way? If so, that would be FANTASTIC! We could do the “prediction test” early on and be motivated to expend far more time than usual with these people to find out how to hasten this typing skill. This begs for a retrospective thick description study of the now independent typists. What about facilitated handwriting? Do they graduate to independent writing?
Another good question is how has the democratization of electronic devices impacted this? AAC and FC trials no longer require a $3,000 “medical” device only available through and with the services of a well-paid professional. A $300 tablet and a lot of trial and error and imagination may suffice. Certainly this must have changed the behavior of families and teachers of people who don’t talk? Professionals should be well-paid but 3rd party payment structures work against any time-consuming solutions. Professional patience is VERY expensive. With these devices it’s natural to experiment and maybe reinvent aspects of FC over and over. It moves the device into the hands of everyone, people with the motivation and the patience to be sure “eventually” is sooner rather than later. So, how do we separate people who might need in depth help to START typing independently vs those who don’t have that potential?
My physical impairments came on and changed and still change gradually but constantly from age 9 to today. I had/have lots of time and intense ballet training from age 3 to 16 for me to figure out how to position my body to write, draw, sculpt, type, sew, and now spin. Some of these activities I can only do standing, some only on the floor. People constantly shove paper and pen at me when they can’t understand my speech. This is usually a small scrap of paper, big enough for 3 characters of my handwriting, and a soft fiber tip pen that I will immediately crush. I can only write standing or kneeling. Can you imagine how people look at me with horror as I take the proffered pen and paper and drop to my knees to write? I could be in a bank, a store, or an airport, feeling frisky (at 65.5 years old, with gray hair to my waist), and decide to give them a lesson. They do anything they can to drag me to my feet or shove a chair at me.
Now, let’s think about science, experimental design and so-called “controlled” conditions. I remember the maze running rat who figured out the maze had no top and made a straight line to the reward walking on the top of the maze walls. Then, after a glass ceiling was added to the maze, the rats, all of whom had names, learned to follow their keeper’s vocal tone cues “good girl,” “no baby Rosie, not that way.” Knowing what condition to promote and what to minimize for a “fair” test is a moving target. Testing human competence has to start where people are and in the appropriate contexts. It may take many tries with many false starts to do this. If we are talking about human communication, something most people can’t even imagine being without, there are no limits to how hard we should try to replicate the best possible situation. It demands all our ingenuity and patience, repeatedly.
My 32 year old son tests with an IQ of 33. With that as evidence he would be presumed incompetent to consent to sexual activity. But is he competent to testify to rape? Evidently not, given his and our experience. When one person, presumed competent, and understands fully the ramifications of his answer is asked did you rape him? Of course he says no. When an adult with a significant intellect disability, has a caregiver that he has had wonderful experiences with, is asked this question and senses the other person will get in trouble if he says yes, and rape to him seems a violent act and what happened was not violent, is it any wonder he says no. Then, when asked by a Adult Protective Services worker what did he do to you, is it a surprise he says go bowling, go to the gym, go to the movies, etc. And than they ask if he ever did anything bad, he says he got a ticket. But when mom asks tell me about a time he did something to you you didn’t want to do – he tells her about penetration by a finger, saying no, and it hurting. But that is not considered evidence as mom was leading him.
How do people with significant communication and/or intelectual disabilities get justice?
The issue of consent for adults with disabilities that make communication difficult or have intellectual disabilities is difficult, and certainly this case does does not seem to involve meaningful consent (if any at all) and the power differential and Stubblefield’s role in his care require any consent issues are treated with care and suspicion. However many, probably most adults with these types of disabilities do have sexuality and may very well have desire to have sex (alone or with someone else), but many people prefer to think of people like this as sexless, and that taken to its abusive extreme can lead to things like the Ashley Treatment. (As a warning to anyone who doesn’t know what that is and wants to google, it involves multiple invasive medical procedures that are not medically necessary with no consent (though to be fair consent seems impossible in that case.))
Also on a completely different tangent Jason Travers greatly misrepresents or misunderstands the social model of disability. While some impairments fit the social model better than others, different levels of various types of abilities are a normal variation of the human condition and attempting to medicalize everything rather than making adjustments for different variation frequently causes some of the variations to be more disabling than others. Other conditions do need medical involvement. For example a blind person with a type of blindness that has no medical treatments and no complications does need to be medicalized, in fact almost everything we do in everyday life does not actually require eyesight; with the right accommodations (for example Braille in addition to printing on elevators buttons, text to speech software on phones and computers) or merely being allowed to do things differently (putting ones finger in a glass while pouring to ensure water is poured to the correct level, having patience: if a blind person is on the corner listening to traffic to know when to cross does not mean they need you to grab their arm and lead them across the street) as well as good training (in using canes for independent traveling for example) it can become no longer a real disability, but rather a variation on the human condition with most problem’s caused by the wider world’s not accommodating this variation (for example that all paper money in the US feels the same and the difference is only distinguishable by sight, this could be easily changed when bills are redesigned and reprinted, but it isn’t done). This obviously does not completely fit every disability, someone with multiple sclerosis for example will need medical treatment for the MS, but living with it is made more difficult than it needs to be by a lack of accommodations. For example if someone cannot drive and their condition makes standing difficult, but does not usually require a wheelchair and so doesn’t qualify for one from insurance, can this person go somewhere where there is nowhere to wait for a pickup from paratransit and must stand and wait after finishing their errand? Likely not if standing for prolonged times causes a flare up or exacerbation or comes with fall risks, and this is a problem that could be fixed by providing seating, a social problem. While in general preventing progression of the condition is usually medical, lack of accommodation can make the disability worse than it would be otherwise.
I’ve decided to close comments on the posts related to this case. They are becoming too difficult and time-consuming to moderate. Thanks, everyone, for the discussion.
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