4 thoughts on “NYT on ‘The Strange Case of Anna Stubblefield’”

  3. Yes, Ibby, yes!!
    Yes, Ibby, yes!!

    First, I want to congratulate the NY Times for the best journalism yet on this case by many miles! Not perfect, but amazing. Bravo Daniel! The URL is: (http://www.nytimes.com/2015/10/25/magazine/the-strange-case-of-anna-stubblefield.html?_r=0). I typed these comments in response to comments about the Times article on a feminist philosophers blog, but I might as well post them here as well.

    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.

    As a person with an involuntary movement disorder and a severe and worsening speech impairment (dystonia), I know that being touched by different people in different contexts is a very very different experience. Even among my most beloved family members, with some I relax when touched, with others not. Every time I sit in a car or sofa or bus or plane or bed, I consciously decide where I want to be depending on who or what I want potentially touching my very different right or left side. When dancing international folk dances, something I love, which require a lot of hand and waist-holding with strangers, some people take my distorted left hand in a way that lets me dip and counterbalance with the choreography, others cause the hand to tremor and spasm. There is a complicated phenomenon of fit, often unpredictable. There is also an issue of relationship. Most of the people I’ve seen use FC do not use close relatives as facilitators. It’s hard to change roles. The mother or brother who has taken care of your intimate needs for so long may logically be the last person who you might want to be your voice. Being touched by them in this new way may not carry with it the same sense of possibility and agency as with someone new. People using FC clearly work hard at it. Often the effort and the sweat is visible. Motherly touch is so often there to do things for you, to minimize effort and time.

    It’s a fine line. I’ve heard Judy Heumann speak often on this choice in how to use personal assistance services. She chooses when she wants help to save time and effort and when she wants to do something herself, even if it means lingering over it. This fine line is not easy in rearing any child. It should be a major conscious decision with a disabled and “uncommunicative” child or adult, but circumstances, personality, and attitudes can be major barriers. A parent can inadvertently hold a child back just because they know them too well in one way in one context and they lack the imagination, time, and encouragement to see change. We now know IQ is not a universally valid measure, nor is it fixed. Use it and it grows. Don’t use it and you can lose it.

    Movement disorders like CP are neurological. You can’t separate movement from thought nor thought from emotion. The height of the stakes or the level of emotional charge of the activity will always impact the level of involuntary movement or lack of movement. That’s something we all experience. It’s intuitively logical (fight or flight, calming or exciting). I would have predicted that D.J.’s mother is the last person with whom D. J. would comfortably type. The fact that he didn’t type well with her could be evidence that those with whom he did type were leading him. But, it could also mean that FC or supported typing is as much an art as a science. It’s a dance. All the training in the world won’t make duet partners interchangeable. Dancing with mom will always be unique, and not all dances are appropriate or even possible for specific pairs. With extreme patience anything is possible. But if D.J.’s mother or brother had extreme patience they might have worked out signals for yes and no long ago. D. J. has the kind of CP that also makes initiating movement very difficult. It can take him a full minute to gather himself to start moving. It’s so much easier to do things for him than to wait. I will guess that most people never wait long enough for him to do anything.

    What’s missing in this case and in all the commentary around it? D. J.’s voice, or any disabled voice. I’m not him. I don’t have CP. But I’ll bet my disabled person intuitive understanding of his experience from the inside out and my anthropological training to observe in situ from the outside in with that of any able psychologist. If D. J. can’t describe his experience, why not listen to other people whose experience is as close as possible to his? There was not one disabled voice in this whole trial. Not one! The people supposedly speaking for D. J. were his family and professionals and not even they are disabled.

    [Moderator’s note – we’ve removed portions of this comment to comply with our comments policy.]

  4. 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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