The Strange Case of Anna Stubblefield
October 20, 2015 10:08 AM   Subscribe

She told the family of a severely disabled man that she could help him to communicate with the outside world. Then, she says, they fell in love.

Facilitated communication has appeared before on Metafilter (well, Metatalk), in the case of a comatose Belgian man.

The APA rejects it entirely.
posted by Aubergine (62 comments total) 13 users marked this as a favorite
 
My own opinion, after reading the story, is that even if FC worked entirely as advocated by its proponents, it would still be highly inappropriate for Anna to have begun a sexual relationship with someone she was, in effect, treating/working with in a therapeutic capacity - combined with the substantial evidence that FC is not the breakthrough in communication that is claimed, her behavior seems predatory, although I can also accept that she may have truly believed she was doing no harm.
posted by Aubergine at 10:15 AM on October 20, 2015 [31 favorites]


Wasn't this an L.A. Law episode back in the 80s?
posted by Melismata at 10:28 AM on October 20, 2015 [3 favorites]


This was every L.A. Law episode.
posted by dances_with_sneetches at 10:35 AM on October 20, 2015 [8 favorites]


FC was also a major plot point in at least one L&O episode. A young man in a wheelchair who used Bliss symbols, if memory serves.
posted by feckless fecal fear mongering at 10:57 AM on October 20, 2015


A young man in a wheelchair who used Bliss symbols, if memory serves.

No. Bliss symbols are a method of augmentative communication, which is not to be confused with facilitated communication.
posted by mandolin conspiracy at 10:59 AM on October 20, 2015 [3 favorites]


The episode revolved around whether his caregiver was helping him move his hands where he wanted on the board or applying her own bias, I think. Googling isn't helping me find the summary.
posted by feckless fecal fear mongering at 11:06 AM on October 20, 2015


FFFM, that's the exact plot of the L.A. Law episode I'm trying to find.
posted by Melismata at 11:08 AM on October 20, 2015


That would be facilitated, yeah, but using a device that's credibly employed for augmentative communication as well.
posted by mandolin conspiracy at 11:10 AM on October 20, 2015


If Anna believed that DJ was mentally competent and capable of sexual consent, not to mention earning a college degree, why did she never urge him to try to reverse the legal ruling that he was mentally disabled? What, 2 years was long enough to fall in love but not to do something concrete to help DJ have a more independent life?
posted by muddgirl at 11:12 AM on October 20, 2015 [15 favorites]


Marjorie Anna Stubblefield goes by her middle name, pronounced with an aristocratic a, as in the word ‘‘nirvana.’’

That's a weird way of describing a perfectly normal way of saying "Anna."
posted by The corpse in the library at 11:20 AM on October 20, 2015 [26 favorites]


Reading this - I feel like his family were willing to accept that he wasn't as mentally disabled as they had thought, but still want to treat him as a child.

Mentally disabled people are still adults: they feel the need for sex and romance. Yes, there are consent issues, depending on their functioning. But they also aren't children. They have to be allowed to express their sexuality.

The situation here is complicated by the therapy-like relationship, but I didn't see that she was actually a therapist. Also, there are people who work as sex surrogates and are physically intimate with people as a part of therapy.
posted by jb at 11:25 AM on October 20, 2015


Mentally disabled people are still adults: they feel the need for sex and romance. Yes, there are consent issues, depending on their functioning. But they also aren't children. They have to be allowed to express their sexuality.

I think the issue is that mentally disabled people also have the right not to be sexually assaulted, which is what the court decided happened in this case.
posted by roomthreeseventeen at 11:27 AM on October 20, 2015 [16 favorites]


It wasn't clear: did the court determine that DJ didn't consent, or that he is incapable of consent? These are very different. A 13 year old may consent (sometimes enthusiastically) to have sex with an adult, but we've decided that they aren't really capable of consent if an age difference is involved.
posted by jb at 11:31 AM on October 20, 2015


The state set out to prove that D.J. was incapable of consent to sex or physically helpless to resist it, and that Anna either knew or should have known the same.

The latter - she was found guilty of both counts.
posted by Aubergine at 11:33 AM on October 20, 2015


Mod note: Folks, this is a very difficult case with a ton of very emotionally fraught connections. If we're going to have a thread about it at all, people need to treat other people in the thread respectfully and not accuse other commenters of things like supporting rape just because they're discussing the exact features of the case that make it difficult in the first place. If we can't manage that, I'll delete the thread.
posted by LobsterMitten (staff) at 11:39 AM on October 20, 2015 [3 favorites]


I have to agree with Aubergine; issues with FC and the relationship aside, by this account Anna doesn't seem to show any awareness of how her actions look to others and affect others. This consideration is a basic condition of providing care and support. It's mind boggling to me that this relationship crossed all professional boundaries (to say the very least) and there weren't any concerns from her or from DJ about the appropriateness of the relationship and how it fits into their ongoing relationships with the people around them (mother, husband, daughter, etc.). It comes across as negligent at the very least (or perhaps simply selfish? ridiculously naive?), and pretty easy to stack the issues sky high from there.
"And then he typed, ‘‘So now what?’’

They went back and forth on this question. ‘‘He grilled me on how much I really loved him, how committed I was to him, how I felt about my husband,’’ Anna wrote in an account of their relationship that she compiled six months later at her lawyer’s request."


[author goes on for several paragraphs about their physical involvement, leading to sex]
This is just not at all how a responsible adult care provider addresses the question of "So now what?", especially in an account to be used in court.
posted by iamkimiam at 11:51 AM on October 20, 2015 [8 favorites]


Also, there are people who work as sex surrogates and are physically intimate with people as a part of therapy.

Indeed there are. And those people are upfront about exactly what their therapy entails. This person took advantage of their client.
posted by feckless fecal fear mongering at 11:53 AM on October 20, 2015 [4 favorites]


Facilitated communication has a highly fraught history, and some of the "Well, you can't prove that it works, but you haven't proved it's not working, either" type of adherents that homeopathy does. But the problem is that these people wrap themselves up in the mantle of fighting "ableist oppression," while ironically denying the power imbalance that exists in their doing so - namely, speaking for someone else.

The potential for abuse in such a scenario is rather unlimited.

The article points out that the fact that Anna's "facilitation" couldn't yield basic responses to personal questions (that DJ would have known the answers to) was clearly the last straw for his family.

That said...

D.J. went to court only once, presented by the prosecutor as a ‘‘demonstrative exhibit.’’ His mother led him in, holding up his tiny frame at the armpits. She walked him down the aisle and over toward the jury, as his head rolled back and his eyes seemed to focus on the ceiling lights. ‘‘Jury, this is my son,’’ she said. Then she turned D.J. to face the judge. ‘‘Your honor, this is my son.’’ If D.J. spotted Anna in the courtroom — it would have been the first time in four years — he did not react. Anna’s lawyers later argued that the prosecutor tried to block her from his view, so D.J. wouldn’t reach for her as he used to.

Jesus. "Demonstrative exhibit." As a way to try to establish his lack of capacity for consent, this was likely a ploy on the part of the prosecution to tap into some pretty deep-seated prejudices to get there. Even though I come down pretty firmly on the side of the verdict being right, I don't think this "demonstrative exhibit" in and of itself did anything to establish his ability to consent. I guess it demonstrated whether or not he was able to resist any unwanted advances, sure. But god, what a dehumanizing way to go about it.

Also, there are people who work as sex surrogates

We know lots of people who are or who have been personal support workers, and the question of "sexual assistance," as they call it, is a valid one, and it's something they support. But they also all say to a one that the question of consent (i.e., it's something their client has specifically requested) has to be unimpeachably crystal clear in that anyone who is not the person rendering sexual assistance would also be able, prima facie, to recognize it as an explicit request for said assistance.
posted by mandolin conspiracy at 11:55 AM on October 20, 2015 [15 favorites]


Mod note: One comment deleted. Also I would have hoped this would go without saying but apparently not: don't be gross and horrible about people with disabilities.
posted by LobsterMitten (staff) at 12:00 PM on October 20, 2015 [6 favorites]


Well this is a depressing read.
posted by Carillon at 12:49 PM on October 20, 2015 [1 favorite]


‘Several years ago, one of the biggest F.C. skeptics offered something like $100,000 to any F.C. user who would go and pass his double-­blind test,’’ Ashby said.

If I'm not mistaken, that was James Randi.
posted by dr_dank at 1:10 PM on October 20, 2015 [5 favorites]


I think there are at least two interesting questions here:

1. Can FC work in cases like DJ's?
2. Is a facilitator in a therapeutic role to the person whose communication she facilitates?

I don't think it's controversial *or* interesting to ask whether Stubblefield believes that FC works; of course she does, she bet her life and career on it. And the problem is that a disproof of effective FC in one case really isn't a disproof for another person; we might even agree with the APA that FC is, on balance, misused more often than it is correctly used, and still think it's an open question whether it worked for DJ.

But if FC works, then it's not at all clear that the facilitator has a therapeutic relationship to the person who they assist. If a facilitator is like a sign language interpreter, there's no therapeutic relationship. Is cerebral palsy more like Deafness or like a mental illness? Stubblefield described DJ as a collaborator and ultimately a partner, not as a patient or a client. So clearly she thought CP was more like Deafness.

The best possible version of this is that she found a way to communicate with a mentally competent disabled man and then they fell in love. In the worse possible version she fell in love with her own projection and then repeatedly sexually assaulted a non-consenting adult unable to protect himself.

But there's only one way to evaluate whether or not that happened: to test her capacity to facilitate communication with DJ. A simple test, really. Yet the court did not do this.
posted by anotherpanacea at 1:12 PM on October 20, 2015 [6 favorites]


I don't think it's the court's job to determine if FC is valid or not. They relied on the science which shows that it's not, and Stubblefield apparently couldn't provide any evidence that DJ was mentally competent outside of FC (he really couldn't pass any kind of non-verbal IQ test? He couldn't communicate with eye-targeting? Banging once for yes and twice for no? blinking?).

If Stubblefield's defense was that she knew DJ consented because she spoke to him telepathically, does the prosecution have a duty to prove that Stubblefield is not telepathic?
posted by muddgirl at 1:30 PM on October 20, 2015 [11 favorites]


Banging once for yes and twice for no?

This is the one that really convinces me to feel no sympathy for Stubblefield. She claims that she knew when DJ wanted to speak because he would bang on the floor. Great, this is an intentional action that we can use to communicate with DJ without using FC, right? Apparently that never occurred to her?
posted by muddgirl at 1:31 PM on October 20, 2015 [4 favorites]


I find this quote from the Wikipedia article on facilitated communication to be striking: "Had they exercised due scientific diligence, the developers of FC would have quickly realized that they had done nothing better than turn pliant arms into Ouija planchettes and reinvent the seance." (The article cites the Stubblefield case and one other in which the "facilitator" insisted that the client had indicated consent for sex, as well as a number of cases in which the facilitator had said that the client implicated someone else in sexual abuse, usually a family member.) See also recovered memory therapy.
posted by Halloween Jack at 2:03 PM on October 20, 2015 [4 favorites]


The court owed her the opportunity to exonerate herself. Yet it insisted that she do this without any access to DJ. She didn't get to try any of the techniques you mention because the court assumed from the start that DJ was incompetent, and thus a victim, and thus should not have to face his abuser. She didn't get to put DJ on the stand and ask him to bang his foot or gaze at letters to testify his consent. She didn't get to demand an independent evaluation of FC techniques with DJ, using a neutral third party.

Just imagine that it's at least possible that there's an adult male who everybody thinks is mentally incompetent because of his physical disability. That's possible, right? Maybe not CP; maybe locked in syndrome or something. Now imagine that you claim he is actually mentally competent, and the court (and his guardians) deny you the right to try to prove it.

I don't know if that's the case here, obviously. But neither do any of us, because that avenue of investigation has been effectively barred.
posted by anotherpanacea at 2:13 PM on October 20, 2015 [5 favorites]


Yeah, but they could have said "Anna pronounced like the Frozen character" without the weird class implications of "aristocratic A". Although that makes different frame-of-reference assumptions.
posted by Flannery Culp at 2:25 PM on October 20, 2015 [5 favorites]


This is the relevant Law & Order episode. In brief, there's a potential witness with autism who doesn't speak but has a facilitator, and McCoy shows that it's really the facilitator (who is his mother) driving the communication; it's kind of a minor plot point.

I think it's pretty hard not to see Anna as a therapist; a sign language interpreter is one of many people who can interpret sign language for someone who needs it, whereas FC is portrayed here as something she (and her mother, to some degree) is almost uniquely able to do. If FC worked, DJ would be incredibly dependent on her, making a sexual relationship between them pretty coercive in the best of circumstances.
posted by n. moon at 2:27 PM on October 20, 2015 [11 favorites]


Interesting, I'd remembered it as a far more pivotal scene in the episode.
posted by feckless fecal fear mongering at 2:34 PM on October 20, 2015


Facilitated communication wasn't on my radar before this, but I had been meaning to read The Reason I Jump, which is billed as the memoirs of Naoki Higashida, a Japanese teenager with autism. The English edition was translated by David Mitchell and KA Yoshida and got a decent amount of press, but I wasn't aware that facilitated communication was involved.

It surprised me that David Mitchell would be involved in something spurious, so I did a little poking around. According to Mitchell himself, "the hand-holding only happened when Naoki was much younger, and first learning this mode of communication." He goes on to discuss a video that shows Higashida using a keyboard, with the screen visible as he types.

I also found Temple Grandin's review of The Reason I Jump, where she writes "I was confident that Naoki, a 13-year-old nonverbal child with autism, was not using the controversial method of facilitated communication, in which a person supports the wrist of the nonverbal person with autism." I'm not sure if that confidence came from the tone of the book or other information she had been given, though.
posted by redsparkler at 2:35 PM on October 20, 2015


Yeah, me too; maybe because they end with that mother super upset that McCoy has forced the place where her son lives to close (and disproven that he's been talking to her)...
posted by n. moon at 2:36 PM on October 20, 2015


If her account was true, surely the responsible, caring thing for her to do when they realised that they were in love would have been to find/train someone else to facilitate for him before their relationship proceeded?

Going into a relationship with someone where you are their sole means to express themselves and communicate is so clearly problematic. What happens in the future when you have an argument and one of you has the ability to completely silence the other? Or when he wants to discuss the relationship with a third party?

The road to hell is paved etc.
posted by penguin pie at 2:38 PM on October 20, 2015 [14 favorites]


Re her name... Most people says Anna like banana. And Ana like nirvana.

She says Anna like Ana.


Ermegehrd do not even get me started. I'm named Anna. In Norwegian, which is what my name is meant to be thanks to a long line of ancestral Norsk grandmas named Anna, it's pronounced with a soft A, here called an "aristocratic" A, which makes this granddaughter of potato farmers laugh, even though I know where the American stereotype comes from. For some reason, Anna with a soft A, as opposed to Ana/Aña for xenophobic reasons Americans can easily guess, is assumed to be English-thus-aristocratic where Ana/Aña is not. This assumption of a tenuous at best link to aristocracy does not exist elsewhere.

Anna is also pronounced with a soft A in Italian, French, Swedish, Finnish, Russian...

When I studied piano, there were three of us in our year: one Ana, one Anna, and me as Anna. The other Anna pronounced her name with a soft A, where most people pronounced mine with a hard A even though I prefer the "Norwegian" soft A. In quotes because it's only Norwegian to me because of my Norwegian grandfather.

Anyway. Tangent finished. Article author should have known better than to take a cheap shot based on an American-centric stereotype.
posted by fraula at 2:48 PM on October 20, 2015 [5 favorites]


because the court assumed from the start that DJ was incompetent,

Can you cite where her lawyers asked for an independent evaluation of DJ and were denied?

And stepping outside the court, Anna had 2 years of continual contact to prove using anything other than her own communication with DJ that he was competent. Indeed, as I argued above, she had an ethical duty to do so, yet she did not.
posted by muddgirl at 2:50 PM on October 20, 2015 [1 favorite]


Can you cite where her lawyers asked for an independent evaluation of DJ and were denied?

The part panacea is referring to is probably this paragraph from the article:

Each side called in outside experts to meet with D.J.: Howard Shane of Harvard for the prosecution and Rosemary Crossley for the defense. But before the trial began, the judge ruled that facilitated communication failed New Jersey’s test for scientific evidence. That put Anna’s defense team in a legal straitjacket. Its entire case rested on the fact that D.J. could communicate through his keyboard, or that at least Anna reasonably believed he could. Now much of the evidence of that communication had been summarily tossed out.
posted by john-a-dreams at 2:57 PM on October 20, 2015 [1 favorite]


But again, that doesn't mean that DJ couldn't be evaluated - just that he couldn't be evaluated in the framework of Facilitated Communication. There was literally no other way to prove that DJ was competent? Shouldn't that make an ethicist question their own premise?
posted by muddgirl at 2:58 PM on October 20, 2015 [2 favorites]


How does DJ prove his competence without communication?
posted by Toekneesan at 3:02 PM on October 20, 2015


What prevents him from communicating in the various other ways that Anna describes that she doesn't facilitate?
posted by muddgirl at 3:05 PM on October 20, 2015 [1 favorite]


I'm not sure what you mean?
posted by Toekneesan at 3:08 PM on October 20, 2015


Can you cite where her lawyers asked for an independent evaluation of DJ and were denied?

I can: "Expert can't prove she can communicate with disabled man who may be victim of sex assault, judge rules."

Only the prosecution was allowed to give testimony about DJ's competence. They found him incompetent. The defense expert Crossley (who found him competent) was not allowed to testify, and Stubblefield was not allowed to challenge the findings as a part of her testimony or in any way indicate that she actually has a PhD and relevant research on these issues.

My argument is just for epistemic humility. It's easy to imagine that Stubblefield is actually guilty. Super easy to diagnose arrogance and lack of care, and extra tempting, too, because you get to do it to the chair of a major philosophy department. But we should be cautious: the whole story is making that narrative especially easy because Stubblefield was convicted, but she was convicted in part because that's the only version of the story the jury was allowed to hear.

There will be an appeal. I suspect it will succeed.
posted by anotherpanacea at 3:45 PM on October 20, 2015 [6 favorites]


What prevents him from communicating in the various other ways that Anna describes that she doesn't facilitate?
posted by muddgirl at 6:05 PM on October 20 [1 favorite +] [!]

I'm not sure what you mean?
posted by Toekneesan at 6:08 PM on October 20 [+] [!]


By "communicating in the various other ways that Anna describes that she doesn't facilitate," I think muddgirl is referring to things like DJ knocking on the ground, which Anna said he did to tell her that he wanted to use the FC device. Or maybe by using augmented communication devices/techniques. Anna also claimed that DJ reads at the pace of 10 pages per minute; when they were reading together, how did he communicate with her that he wanted her to turn the page? From Anna's descriptions of their time together, it seems like they had some very basic means of communication other than through FC -- and DJ could presumably use those other means of communication with people other than Anna.

Could Anna's lawyer have called DJ to give testimony and asked him Y/N questions, and had him answer those questions by knocking or through some other physical sign (like blinking)? I don't think the court barred DJ from giving *any* kind of testimony at all, I think the judge just ruled that anything that DJ "said" through FC specifically was inadmissible. If DJ is capable of verbal communication at any level, you would think that FC wouldn't literally be the *sole* way for him to communicate Y/N answers to basic questions about himself and his feelings. But apparently it was, since he didn't give testimony in any way?

This also doesn't sound to me like it was a witch hunt against Anna or that she got railroaded. DJ's mother and brother tried to use FC communication with him for years, under Anna's guidance, and were never successful. Even after DJ's mother and brother found out about the sexual relationship and Anna showed up at their house uninvited, they still gave her the chance to prove that it was really DJ (rather than Anna) who was communicating with the FC by asking DJ questions about Georgia -- but his answers to those questions (imo, and apparently in their opinion, too) were inadequate. I think it's pretty clear that they both wanted to believe that the FC was working and that DJ really was communicating with them, but when the rubber hit the road (i.e., once Anna said she was in love with him and wanted to move him out of their house to marry him), they found they couldn't actually believe it.

What was most disturbing to me in the article were Anna's accounts of what happened when she and DJ tried to have sex, especially that first time, and he kept stopping her. What if he really was trying to tell her to stop altogether, but she didn't listen? Regardless of whether he's legally capable of giving consent -- what if he *didn't* want to give it, but she ignored that or was so deluded that she didn't understand what he was trying to tell her? What if he was trying to tell her to stop but she kept "facilitating communication" saying that he wanted to? What if FC did work, and he felt coerced into saying he loved her and wanted to sleep with her because if he upset her, he'd have no way of communicating at all? I mean, even a best case scenario in this case, in which DJ is cognitively capable of giving consent and the FC communications are really representative of his thoughts/feelings, their relationship is still appalling, imo, because, given the power dynamics involved, he really didn't have any choice but to go along with whatever Anna wanted.

Count me in as someone who thinks that the power dynamic between them made a sexual or romantic relationship inappropriate and coercive -- regardless of DJ's IQ.

I don't think the FC was working, though -- or, at least not in DJ's case. I think Anna deluded herself into thinking it was. Did anyone else listen to the "Dr. Gilmer and Mr. Hyde" episode on This American Life? Anna's strange shift in thinking/behavior reminds me a lot of what happened to the first Dr. Gilmer.
posted by rue72 at 4:07 PM on October 20, 2015 [22 favorites]


I don't think the court barred DJ from giving *any* kind of testimony at all, I think the judge just ruled that anything that DJ "said" through FC specifically was inadmissible.

DJ could not be called to the stand, because he would have needed some sort of accommodation to communicate, and so the judge would have had to instruct the jury how to interpret his responses. Instead, he was evaluated by prosecution experts who testified that he wasn't competent to testify on his own behalf.
posted by anotherpanacea at 4:20 PM on October 20, 2015


I too lean on the side of Stubblefield being guilty, and even if D.J. is competent, Stubblefield is still clear in the ethical wrong, but the judge's decisions seem to leave doubt to whether this is a legal matter or just an ethical one.

The judge probably had their hands tied on what evidence they could allow by law, but Facilitated Communication is easily disprovable by double blind tests and has been hundreds of times in the past. If the Stubblefied case is just like all the other ones it would've been pretty simply shown as a sham by the prosecutor's own scientists. But instead the prosecutor took the more efficient route of blocking all FC evidence, which leaves (small) unnecessary doubt to the whole proceeding.
posted by john-a-dreams at 4:21 PM on October 20, 2015


Stubblefield seems delusional. The co-authored academic conference papers, the 400 level classes, the idea that someone totally non-verbal throughout life would vault directly to that kind of self-expression is nuts. She projected all this deep intelligence and almost unlimited capacity for articulation and self-awareness onto him, but she was comfortable that he was unable to express himself with his own family. I have no doubt she believed all this, but she seems delusional and obsessive.

Who knows how really 'exploited' he was, in the sense that who knows how he truly felt about the sex (perhaps it was just another out-of-control and confusing experience in a lifetime full of them; I don't know that we can imagine how a non-verbal person who cannot voluntarily control their own body feels about physical autonomy). But it seemed like she was using him as a sex prop in her romance with her own fantasies of herself as savior.
posted by zipadee at 5:10 PM on October 20, 2015 [4 favorites]


This is a sad, sad case. If the prosecution is right (I think it is) then a deluded person inveigled herself into a family's life and repeatedly assaulted their child. If the defense is right then an innocent woman has been convicted, and a disabled man has been denied the support and comfort he needs. It's just awful, no matter which way you look at it.
posted by Joe in Australia at 5:11 PM on October 20, 2015 [8 favorites]


By "communicating in the various other ways that Anna describes that she doesn't facilitate," I think muddgirl is referring to things like DJ knocking on the ground, which Anna said he did to tell her that he wanted to use the FC device. Or maybe by using augmented communication devices/techniques. Anna also claimed that DJ reads at the pace of 10 pages per minute; when they were reading together, how did he communicate with her that he wanted her to turn the page? From Anna's descriptions of their time together, it seems like they had some very basic means of communication other than through FC -- and DJ could presumably use those other means of communication with people other than Anna.

I think that assumes those forms of communication can occur without empathy; that DJ has enough motor control to be able to summon responses, like stomping his foot, when he's asked. How could the court tell from his eyes, as Anna claimed she did when he finished a page, that he consented?

Before I go any further, let me note a few things about my own experience. I have two brothers with Down syndrome. I also have a daughter with several developmental disabilities including autism. Both my brothers and my daughter are highly functional so I'm not trying to posit that I have any experience with FC as described here, or think FC is legitimate based on my own experience. But for my entire life I have served as an interpreter for those who seem to make little sense; those who struggle with communication, particularly in an unfamiliar context. I have frequently facilitated, in a very different way, their communication. Perhaps I’m deluding myself into thinking they’re better off for it, but I suspect without someone like me their wishes and liberty would be severely restricted.

I think that there can be communications of infinite variety that can not be demonstrated in a court setting, or could be quantified in a research setting. There are connections that can be made that evade traditional communication. We can see the kinds of connections a pet or child can have with a person and recognize their legitimacy without needing proof that those connections are quantifiable or replicable. I wonder if that's what we have here. I'm not trying to equate DJ with either a child or a dog, but I am wondering if factors like time and shared experience and caring and the right chemistry of personalities can't transcend beyond what can be achieved in a controlled setting. Could what we're missing here be related to an elusive empathy?

Part of my concerns about this situation involve my younger brother's experience, and the experience of many other cognitively challenged individuals who are relegated to an asexual life because the world around them is uncomfortable with how they might negotiate relationships. It wasn't true for my younger brother. In spite of having Down syndrome he met and fell in love with a woman who also had cognitive disabilities, though not as severe as his. Members of my family objected, and many people related to the social services they received objected, and quite a few strangers offered unsolicited opinions about the appropriateness of such a relationship. For a while he was clearly happy in the relationship, but it didn't work out and they eventually divorced. My approach involved only providing support.

We shouldn’t conflate intellectual development with emotional development. I have met many cognitively challenged individuals whose emotional maturity far surpassed the emotional maturity of most neurotypical people I contend with on a daily basis. I would caution anyone against assuming that consent requires neurotypical communication skills, and find the default posture, imposed celibacy, unfair. DJ may be P.’s son, but he is not a child. I don’t know if consent occurred here, but I know for sure that I don’t know, and would not default to an assumption of sexual assault.
posted by Toekneesan at 5:41 PM on October 20, 2015 [15 favorites]


Toekneesan, I appreciate your perspective on this. I find the notion that FC facilitators are essentially playing Ouija to be disturbingly dismissive and reductive, and you describe clearly some of the reasons that this may be so. My sense is that there is a lot going on in the act of communicative touching that is indeed emotionally nuanced yet elusive and difficult to understand.

I say this as someone has spent many years practicing dance and movement arts, and in doing so felt countless moments of communication among dancers that were beautifully uncanny in their combination of clarity and irreducibility. As in, those involved understand what is going on but also can't entirely explain how or why. Logically, I understand why language is being used here as a metric for cognition, but from bodily experience, I have a strong feeling that "what DJ said" is probably far more complex than the tidy package that people want or expect it to be.

I'm not saying that Stubblefield's behavior was ethically unproblematic - I agree with a lot of comments upthread re: the problems of not recognizing her own power over DJ in this situation. But I do suspect that there was a ton of communication between her and DJ that would be difficult for others to see or understand, not to mention measure.
posted by marlys at 7:28 PM on October 20, 2015 [2 favorites]


My sense is that there is a lot going on in the act of communicative touching that is indeed emotionally nuanced yet elusive and difficult to understand.

We're talking about consent. That is easy to understand. And if it isn't, it's not consent.
posted by mandolin conspiracy at 9:01 PM on October 20, 2015 [10 favorites]


I think that there can be communications of infinite variety that can not be demonstrated in a court setting, or could be quantified in a research setting. There are connections that can be made that evade traditional communication.

Not good enough to indicate consent. Never good enough to indicate consent. Because there are a shit-ton of people out there who want to believe that someone really wants to have sex or be with them, even when that person clearly and unambiguously tells them that they do not. And a lot of the delusional people are otherwise very high-functioning and are neither legally impaired nor legally insane. But they truly believe that the objects of their obsession, whether celebrities or everyday people, are sending them secret, subtle messages that only they can interpret. There is nothing to indicate that FC is anything but that same sort of projection or delusion, save for a few isolated random incidents that have about the same weight as those few seconds of video that made it seem that Terri Schiavo seemed to be reacting to stimuli, carefully culled out of the hours of video of her reacting randomly to various stimuli or nothing at all.

And, marlys, sorry if you "find the notion that FC facilitators are essentially playing Ouija to be disturbingly dismissive and reductive", but follow my link above to the Wikipedia article on FC--it has destroyed lives, either by leading people to sexually abuse those incapable of giving or showing consent, or by leading the facilitators to accuse others of sexual abuse when no evidence exists. Just as there's no evidence "that there was a ton of communication between her and DJ that would be difficult for others to see or understand". It's difficult to accept in Anna Stubblefield's case; she did a lot of work for social justice for most of her career, and was genuinely interested in communication across disabilities (Braille and sign language) before she and her mother latched onto FC. But wishful thinking really isn't an excuse here.
posted by Halloween Jack at 9:23 PM on October 20, 2015 [11 favorites]


I feel sorry for Anna, she sounds...well intentioned but way deluded, I guess. That link at the top seemed to indicate that the APA folks think people were deluding themselves that this technique worked rather than being flaming liars, and she sure does sound like she talked herself into something there.

Even weirder that she's married and did this, though. Oy.
posted by jenfullmoon at 9:54 PM on October 20, 2015 [1 favorite]


why did she never urge him to try to reverse the legal ruling that he was mentally disabled?

This may be an aside in the context of this story, but it's often quite difficult to "undo" guardianships/conservatorships of adults with disabilities once that type of legal status is established. The person is, by definition, at a disadvantage in approaching the court for a change in status. The individual's very ability to retain a lawyer and challenge the status may be contested. It's quite an Alice-in-Wonderland area of law. And that's before getting to the practical aspects of finding and paying for lawyers and expert witnesses who are good and who understand disability from a rights and inclusion perspective.
posted by ClaudiaCenter at 12:16 AM on October 21, 2015 [1 favorite]


Just because communication is subtle or difficult in many contexts doesn't mean one should believe that communication occurred here. In cases like children, dogs, dancing, or interaction with cognitively impaired but emotionally aware persons, it is generally quite obvious to an outsider that in broad outline a form of communication is occurring. Indeed, dancing is aesthetically pleasing to an observer precisely because we clearly and intuitively see that the partners are physically in communication even if we can't verbally express exactly what is going on. And of course dogs and children are so good at expressing non-verbal messages to us that we feel emotionally responsive even to pictures of them.

In this case an outsider 'communicated' with an individual at a level exponentially beyond what that individual's loving and attentive family had not been able to do so after decades of effort, and their communication rapidly grew so complex and intricate yet so clear that the person was supposedly able to clearly express multi-thousand word, publication-quality essays and negotiate the details of an adult married woman's desire to leave her husband for him despite being totally non-verbal for decades. It's a different kind of case.
posted by zipadee at 3:51 AM on October 21, 2015 [7 favorites]


There's another factor worth considering here that was alluded to in the article but isn't being discussed and that is the perceived spiritual morality of the situation. How much of P. and Wesley's objections are rooted in their faith, which the article and the trial transcripts seem to imply was a primary influence on their life. Is their discomfort entirely based on a perception that Anna fabricated communication, or might it be heavily influenced by the immorality of their son/brother having an affair with a married woman? It is not uncommon for the cognitively impaired to be infantilized, even by their own family. And I have frequently observed families of the cognitively impaired describing their offspring/siblings as having supernatural grace that the rest of us are not capable of. They seemed more than willing to believe DJ was communicating up until they were told that he was communicating to them that he loved a married woman and had had sex with her. They also seemed to take offense at the thought that DJ didn't like gospel music, or communion wine, but liked another more expensive wine. It is possible he swayed to music at church because he liked music, and it was the only music he was ever exposed to. But once exposed to other kinds of music, is it possible he found gospel less attractive?

... the person was supposedly able to clearly express multi-thousand word, publication-quality essays. I did not find this in the article. Only that he wrote, and struggled to write, a one page essay delivered at an SDS conference. Did I miss it?
posted by Toekneesan at 5:27 AM on October 21, 2015


This article is fascinating. One quick question, though. Numerous times in the article, reference is made to severely disabled people who seem to be simply plopped behind a keyboard before they begin typing. Where and how did they learn to read? I'm especially curious about those who were thought to be so disabled that no effort was made to teach them to read. Is the implication simply that all of these people picked up reading on their own? The article states that one person learned to read by "reading the dictionary at age 3." Or is it the case that these folks actually were taught to read at some point, and such background is simply missing from the article? To go from an environment where your family thinks you have the mental capacity of a toddler (and thus presumably not exposing you to reading material) to reading books at 10 pages a minute hints at the mind of an incredible intellect, far superior to most.
posted by (Arsenio) Hall and (Warren) Oates at 5:53 AM on October 21, 2015 [3 favorites]


Hyperlexia often goes along with autism and other communication disorders.
posted by Daily Alice at 6:07 AM on October 21, 2015 [1 favorite]


Interesting, Daily Alice - thanks! Reading through the wiki, it doesn't seem to overlap all that much with the types of people discussed in the article, but it's still an interesting and intriguing possibility.
posted by (Arsenio) Hall and (Warren) Oates at 6:09 AM on October 21, 2015


Late to this thread, but just wanted to share some things I learned from a woman with significant cerebral palsy I worked with many years ago.

She was born in the middle of the last century and spent half (or so) of her life in foster homes and later instutionalized in a state hospital assumed to be incapable of speech and to have an extremely low IQ. She was subjected to numerous dubious treatments in the state hospital (ECT and others) and physical and verbal abuse throughout. Unfortunately I expect there are a number of people who share too much of her history.

Sometime in the wake of deinstitutionalization she met a competent advocate and was given opportunity to show her intellect. Once people stopped assuming she was completely mentally incompetent and began earnestly trying to communicate with her they succeeded! Not via FC or anything like that, but via her own speech.

When I met her she was very independent and had access to a motorized chair with a control set tailored to her movement capabilities and was living well in an assisted living facility. One of the first things she told me was that people are wrong to see someone with cerebral palsy and assume it is a cognitive impairment. It was very hard to understand her but after she repeated herself several times it was very clear.

We worked together on a number of occasions, and it took me quite a while to learn to understand her accent but in the end it was quite manageable with a commitment to try, patience and respect for her time and energy.

On a number of occasions I got to meet strangers with her and it was tremendously disturbing how many people would assume that because they did not immediately understand what she was saying that it must be nonsense and how in some situations where she was plainly the expert they would try to resort to talking and looking and acknowledging only to me even when she was the one answering their questions.

Perhaps needless to say, I would not consider her to have a low IQ -- not that I'm really qualified to judge -- but you know, she was considerate and thoughtful and said things I consider to be insightful so if her IQ was "low" then mine must be lower.

I can't help but think how much harder her life would've been without the modicum of speech ability she has. She quite likely would have been more-or-less locked in and unable to do her great advocacy work for herself and others. It's nightmarish to me to consider what if this person I respect had had to live her whole life like that and staggering to think there must be other intellects and characters that are trapped and unacknowledged.

I don't trust Stubblefield, she seems to've put her own interests too far in front of D.J.'s but I also don't trust the juries judgement here (particularly in the context of the objectifying "demonstrative exhibit") because I've met a lot of people in this world who basically think because someone has a significant motor disorder they must be otherwise impaired.
posted by Matt Oneiros at 12:21 PM on October 23, 2015 [6 favorites]


... the person was supposedly able to clearly express multi-thousand word, publication-quality essays. I did not find this in the article. Only that he wrote, and struggled to write, a one page essay delivered at an SDS conference. Did I miss it?

You did miss it. I don't know how long it was, but"[i]n October, P. went with Anna and D.J. to a second conference in Milwaukee. The paper that he gave there, read aloud by Anna’s father, ended up being published in a peer-­reviewed academic journal."

A couple of people have commented on this, but the thing that didn't really pass the smell test for me was that DJ was not only able to read and write without instruction (10 pages a minute for someone who has difficulty with motor control seems pretty incredible), he also, at least in paraphrase, seems pretty emotionally mature and intelligent for someone who hasn't substantially communicated with other people before this FC. I appreciate anotherpancea's comments about checking our assumptions, and it does seem that there is some evidence for FC working with particular individuals, but it's less whether this works in specific for DJ and more what the working claims to reveal that gives me pause.
posted by OmieWise at 12:42 PM on November 3, 2015


Retraction Watch is now reviewing Stubblefield's and DJ's articles. There's at least some indications that Stubblefield's linguistic patterns are showing up in her alleged FC of DJ:

Stubblefield article in DSQ:

“people who cannot speak and have trouble regulating their body movements by presuming that they are profoundly intellectually impaired”

“Detractors have contended that the facilitator […] rather than the FC user […] is the author”

“D.J.” article in DSQ:

“people who cannot speak and have trouble controlling their body movements […] are labeled profoundly intellectually impaired”

“detractors claim that the facilitator rather than the FC user authors”
posted by anotherpanacea at 6:52 AM on November 8, 2015 [3 favorites]


Slate article about FC
posted by bq at 6:35 PM on November 12, 2015 [3 favorites]


Just to clarify, there is only one article that DJ and Stubblefield currently share "authorship" on, and when you remove the two lengthy quotes from that article, one from the work of Stephen Pinker and the other from the work of Gina Green and Howard Shane, the length is 995 words. The other articles that Retraction Watch mentions list only Stubblefield as the author. To my knowledge that is the only time DJ has been "published" in a peer reviewed journal and it was first presented at an SDS conference. It is also the only article in Disability Studies Quarterly that lists DJ as "author." I have not done an exhaustive search of the literature elsewhere, so I suppose it's possible there is another journal with an article claiming authorship by both of them, but I have yet to see it mentioned anywhere.

Rather than linking to the article in question and exposing DJ's real name, I will instead copy the article below. Please note it is from an open access journal published by the Ohio State University Libraries and does not contain a copyright notice.
In this paper, I will discuss how people can learn to use language in the absence of communication. People look at facilitated communication users and think that they humbly learned to think only after getting the means to communicate. They are working under the assumption that the only way to learn language is through interaction. I will use ideas from Harvard neurologist Steven Pinker, studies of gifted children, and other evidence to demonstrate that people likely use language from the earliest moments of infancy, even before they can talk. Therefore, learning to communicate is not necessary for learning language. If people believe that people who do not talk do not think, they will believe that they have nothing to contribute. This is a part of disability oppression that must be put forth for more study.

Facilitated communication (FC) users are people who cannot speak and have trouble controlling their body movements. Without support from a facilitator who helps us to stabilize our bodies, we cannot point where we want. Unable to communicate and demonstrate our intelligence, even by pointing, we are labeled profoundly intellectually impaired. With support, we can type with one finger on a keyboard and access communication.

There has been controversy about FC: detractors claim that the facilitator rather than the FC user authors the words. This harms people who can only communicate with support, by casting aspersion on our ability and jeopardizing our access to the support we need. Sufficiently many people who started with FC now type independently, and more than enough studies have validated FC, so that FC should no longer be seen as controversial (Biklen, 8-9).

The skepticism of FC detractors has stemmed in part from their assumption that people who cannot talk cannot have learned language and cannot think. They wonder how an adolescent or adult who is given access to FC for the first time can, as happens in many cases, start typing intelligibly right away. For example:

Does FC enable individuals with disabilities to produce messages that are unquestionably their own or are there simpler, more plausible explanations? In FC, two individuals are involved in creating messages by selecting letters to spell words. Prior to their introduction to FC, one of those persons has displayed limited, if any, ability to read, spell, and express abstract concepts through any mode. Typically, this individual has mental retardation… (Green and Shane, 153)

People have thought that thinking requires language. I agree, but they are wrong that language needs communication. They are working under the assumption that the only way to learn language is through interaction. For example, Jean Piaget believed that children learn language (logic too) by talking. He argued that they learn through having grown-ups talk with them (Piaget 1981, ch. 8).

On the other hand, Steven Pinker, a neurologist from Harvard, looks at things differently. His theory is thinking in language is built into the human brain. He justifies his belief by giving the following evidence.

Pinker argues that children learn at least some abstract concepts before they limp into speech. For example, infants looking at Mickey Mouse dolls look longer if the number is not what they expect:

The developmental psychologist Karen Wynn has recently shown that five-month-old babies can do a simple form of mental arithmetic…In Wynn's experiment, the babies were shown a rubber Mickey Mouse doll on a stage until their little eyes wandered. Then a screen came up, and a prancing hand visibly reached out from behind a curtain and placed a second Mickey Mouse behind the screen. When the screen was removed, if there were two Mickey Mouses visible (something the babies had never actually seen), the babies looked for only a few moments. But if there was only one doll, the babies were captivated—even though this was exactly the scene that had bored them before the screen was put into place. Wynn also tested a second group of babies, and this time, after the screen came up to obscure a pair of dolls, a hand visibly reached behind the screen and removed one of them. If the screen fell to reveal a single Mickey, the babies looked briefly. If it revealed the old scene with two, the babies had more trouble tearing themselves away. The babies must have been keeping track of how many dolls were behind the screen, updating their counts as dolls were added or subtracted. If the number inexplicably departed from what they expected, they scrutinized the scene, as if searching for some explanation. (Pinker 1994, 59)

Thinking does not need communication. In Pinker's book, he motions to the idea that people learn grammar before they start speaking. I might not be able to talk, but I think grammatically perfectly. The mostly believable idea that grammar is learned through talking is not true.

Pinker's second clue is how people think in different languages. He shows that not only do we learn grammar in the absence of talking, but it is possible to learn multiple grammars this way. Linguistical knowledge is not predicated on knowing how to talk in the language.

In thinking about how people learn to read in the absence of communication, it is useful to look at studies on how gifted children learn to read. In an article called "Children Teach Themselves to Read," the people interviewed could read young by teaching themselves (Gray, 2010). Thinking about how they do that helps us to understand how you can legitimately get literacy with no communication.

People think that young people learn by being taught. But they can teach themselves. Looking at books is only one ploy. Other ways include playing with alphabet blocks, hearing their parents helping their brothers and sisters, looking at labels and signs, and, too, television.

There are lots of studies permitting us to know how gifted children learn (Cunningham, 2006; Aldridge and Rust, 1987; Price, 1976). But listening to facilitated communication users is apparently not valid. Hopefully, people who are interested in literacy will start to notice that we know how we learned.

Judging from Pinker, not making too many guesses from only the experiences of typical children but looking how children like me learned to use language, then one can see that people learn language in the absence of communication.

However, I must not limit the usefulness of communication. I propose that only people who cannot talk learn language mostly by thinking in place of by communication. People who talk mostly learn language by talking. I think that the ability to talk makes people learn thinking differently. If one cannot talk, then the ability to learn lots of things in the absence of communication kicks in.

I might begin by pointing out that people like me jump (that is my term for when my body starts performing actions I do not intend) when people look numerous. To many people you look like mimicking, but I might learn things. (I mean that when there are people around, I look like I might be copying them, but I might be learning.) I now know how to read because I looked at things people were reading.

I might also point out that people might not look like they pay attention but they learn things. You might just not know they are learning. People like me jump lots, but my learning has been going on.

I believe my knowledge of language lies in listening to people talk. I learned to use language in my head before I began communicating. But having communication helps me think more clearly. I might not be making sense in my head. Communication means I get feedback.

I got my means of communication later than most people. But people know how to think in their heads before they learn to talk.
posted by Toekneesan at 3:48 AM on November 13, 2015 [1 favorite]


"On September 9, I went to witness the opening day of testimony in the trial of Anna Stubblefield. I went with two friends, one who has polio and uses a wheelchair and one who has cerebral palsy and uses a device called a “Lightwriter” to communicate.

I wasn’t prepared for the wave of emotions that would hit me.

Living with cerebral palsy since birth, I’ve seen and known many people with variants of the condition and other disabilities. I’ve encountered stereotypes and prejudice, yes. But I have also encountered so many positive examples of what disabled people, even “severely” disabled ones, can achieve. ...It is my feeling that D.J. is being denied his rights to live fully and to be in pursuit of the life that he’d want for himself.
"— a disability advocate with CP, who goes by Julie Equality, on what she witnessed at the Stubblefield trial. The Right to Be Loved
posted by Toekneesan at 11:03 AM on November 13, 2015 [2 favorites]


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