I’ve learned so much since my first day with the 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I want to take things in order, here, as much as possible.
The first time I met her, Tangles met me at the door with an excited shriek (she vocalizes a lot– often with loud whoops and yells) and arms out.
“Hi!” I said to her, introduced myself, and because I was unsure what the extended arms meant, I asked “Do you want a hug?” and opened my own arms for her to walk into if she wanted. Instead she grasped my hands and brought them together. OK, at least this was familiar ground for me– clapping games. Fishy loves those too. I let her clap my hands together, clapped her hands between my own, and clapped hand-to-hand in single and double “hi-fives.” I tried a few more complex patterns like Pat-a-Cake, which seemed beyond her grasp. I now suspect I simply did them too fast for her. Her mother showed me a specialty fist-bump that is her very favorite.
I noted that she was comfortable with casual physical contact, and later noted that she may have decreased skin sensitivity, like Fishy does– she doesn’t seem ticklish and enjoys touching rough textures. Her mother told me that she has pica (the desire to eat non-food items), but although I regularly see her chewing anything and everything she finds on the floor, I’ve rarely seen her attempt to swallow something that isn’t edible. I made a mental note to find chewable toys for her (every barbie doll in the house is missing bits and has its hands and feet chewed down to flat stumps).
She’s also a big fan of eating, and frequently wanders into the kitchen in search of easy-to-grab food. The first time I fed her, I followed her mother’s advice of forking up bites and placing them into her mouth. She was cooperative, but if I went too slowly, she’d grab a fistful of food off the plate instead. The second time, I guided her hand-over-hand to use the fork herself, which I think worked a little better. As with many things, I think tidy self-feeding is a skill she can learn if given sufficient practice. Her hands are quite shaky, though– I suspect she may prefer finger-foods whenever possible. Some days I do too.
The first time I visited the girls, their mother was there the entire time. We talked a lot about what I would need to do and went over all the standard basics– meds, allergies, emergency contact numbers, where things were kept, etc..
Both girls kept interrupting this discussion wanting me to play with them. I sat next to Tangles on the couch and periodically clapped with her, while also looking up regularly at Curls’ insistence that I watch her perform some gymnastic trick or other.
I tried to remember to include Tangles in the conversation wherever possible – regularly saying things to her instead of just about her.
When I asked about how Tangles communicates, her mother told me that she doesn’t yet. “Behavior counts as communication,” I said, “She may not use language, but how does she let you know when she needs or wants something, or if she’s upset?” Her mother gave a little more thought to the answer this time, but told me that Tangles doesn’t do those things very often. The few she could give me were:
- head-banging (against the floor, furniture, walls, or people) when upset.
- going to the fridge to get food for herself (which her mother said she does more frequently than she should, and her food intake should be limited to normal meals and snacks. She appears to be towards the upper end of a healthy weight range, and I suspect that she’s starting to get those teen-hormone food cravings.)
- starting recently, tugging on her diaper when it needs changing (a good sign of increased awareness of her own body — maybe she’s ready to start potty training? I have yet to see her do this, though)
I discovered another. A little later, lost in conversation with the mom, I jumped when Tangles unexpectedly smacked my shoulder from behind with an open hand.
“Oh, I’m so sorry! She hits sometimes!” her mom told me. I reassured her– and Tangles– that it was perfectly OK.
“You just startled me, kiddo,” I said. And I turned to her and offered her my hands to clap with. Because I knew– she wasn’t hitting me. She was trying to touch me to get my attention. And she just didn’t know yet how to do it gently. I hope she learns this soon, because she’s big and strong enough that it does hurt to be smacked by her, and I’d hate to see other people misunderstand and restrain or punish her for her attempts to communicate.
Since then, her mom and I have talked about this a fair bit. To my surprise, the hitting– an open-hand smack, usually on someone’s chest or back) is a relatively recent thing that Tangles does both to get attention and to express displeasure. I had expected that it was a hold-over from a younger age where it was less problematic because she wasn’t strong enough to hurt anyone. The fact that it’s a recent development is highly encouraging for two reasons.
First, it shows a recent increase in her intent to communicate, which is very exciting. The fact that she wants to get people to pay attention to her needs and preferences and has figured out a way to get these things noticed is a very good thing. Now it’s just a matter of providing her with a more preferable way to do so– which, sadly, is not something I know how to implement. I’d especially like to see her acquire an unmistakeable way to say “no” or “stop.”
Second, the fact that hitting people isn’t a long-standing habit means it will be easier for her to adapt to doing something else instead. If she had a long history of getting the result she wanted from this action, she might be understandably reluctant to give it up. Now we just have to find something that’s approximately as easy for her to do and makes sense to her. I don’t think she means to strike me as hard as she does, but her mother told me that one aspect of her cerebral palsy may be the inability to control a motion once she has initiated it. I’m still, for the time being, trying to simply modify the hitting to a more gentle touch, guiding her hand to tap my shoulder lightly, but I really do want to talk to an expert about how to help her turn this into more formal communication.
I played with the girls while their mother got ready to go out for the evening. By the time the mom left, it was almost bedtime for the girls, so all I really had to do was brush their teeth and get them into bed.
They nodded off quickly, and I was left thinking this would be easy, that I had it all figured out. The girls both seemed to like me– what more did I need? I was in for some serious surprises.
I wasn’t, at first, going to write about this here. I was going to keep this blog for writing about Disability Rights and Disability Positivity and The Right Way To Do It. I wasn’t going to talk about my mistakes, my second thoughts, my doubts… not in public, anyway. Not because I was ashamed, but for fear of hurting feelings, and because I wanted me readers to believe that it is possible to be a perfect advocate, one who always gets it right.
But that isn’t fair and it isn’t helpful. You need to hear not just my conclusions about disability, but about the journeys that took me to them. You need to hear my mistakes and my failures. So I’m going to admit to something unspeakably horrible here, something that I need to apologize for.
Yesterday I introduced you to a 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability. But I didn’t write down all of my first impressions… that first entry carefully avoided the intense uncertainty I felt after my first few evenings with this girl and her sister, whom I’ve dubbed “Curls.”
I enjoyed spending time with Tangles. She was lovely, and sweet, and fun to play with.
But I kept looking for something more. I kept wondering how much she could understand, what was really going on in her mind… and if she really had a mind at all. A terrible, dark part of me kept asking, “what if she really is as stupid as her doctors think– a pretty, empty shell? What if there’s no one THERE? How would I know? Am I anthropomorphizing– imagining the existence of a personality and an intelligence where none exists? What if she’s thinking nothing at all? What if, for all my talk and beliefs and writings about equality and the rights of the intellectually disabled, I am wrong, and there are people who really don’t have any kind of mental potential? What if she is capable of nothing but simple needs and wants and mindless imitation? What is it that makes a person a person, and does she have it?” This train of thought ate away at me, kept me awake at night.
I am sorry, so sorry for ever thinking those things.
I am sorry for forgetting the rule: Presume Competence. For thinking that her intelligence was something that I had to see before I could believe in it.
It’s very easy for me to follow this rule in the abstract. I get angry every time I see the title of the initial report on Carly Fleischmann (an autistic young woman who first communicated by typing at age 13 after her parents had tried numerous other communication methods with her to no avail): “Autistic Girl Expresses Unimaginable Intelligence!” “NO!” I think every time, “Her intelligence is not only imaginable– it should have been imagined and believed a lot sooner!” That was my first, immediate reaction to her story. So why is it that, face-to-face with a pre-verbal 10 year old, I had trouble imagining that she was intelligent? Or rather, how is it that I imagined her to be intelligent and then was afraid that her intelligence existed only in my imagination?
Allow me a philosophical aside here, and before I begin, let me remind me that the following are my personal views. I know many of you will not agree with them, but I hope that they will not cause you to lose respect for me. They are still open to debate, much pondering, and possibly major changes. I know that I have much to learn. This is the best I can do with what I know thus far.
I do not know what it is that makes human beings unique. I believe that we are, and that the reason why has something to do with our brains and how they work. I am a firm skeptic. I do not believe in a soul, or in anything else intangible that contributes to how special we are. I do agree with Immanuel Kant that every human being is invaluable, that each and every one of us has an intrinsic worth that is due solely to the fact that we are people. I believe that the human spirit, the result of who we are and what we think and do, is an extraordinary and glorious thing that is precious beyond words. But that still begs the question of what constitutes a “person” in the first place.
Because I do not believe in any supernatural thing that distinguishes a person from a nonperson, I tentatively conclude that the functioning of our brain is a critical factor. Because of this, I believe that a fetus whose brain is not yet developed enough is not a person (I still don’t know exactly what “enough” is). I believe that a person who has suffered brain death is no longer a person (note– this does not mean that it is ok to disrespect the body that is what remains of this person. One of the oldest traditions of the human species is that we treat our dead with respect). Treading a dangerous line with the disability rights community here, I find myself unable to argue that a fetus born with anencephaly (missing the majority of the brain) is a person either.
How much of a brain is required to make a person into a person? I don’t know. Definitely more than the brainstem, which provides only for breath and heartbeat. A human body is not enough– nor is it necessarily a limitation on personhood. I’m a science fiction fan who is interested in medical ethics. I ask myself– is a person whose genes have been artificially altered still a human? How about a cyborg? Is an android a person? The famous Star Trek episode that addressed that question (“Measure of a Man”) came to a disquieting conclusion: we can’t prove that an android is a person. But neither can we prove that a human being is person. At the risk of dehumanizing all of us, we must err on the side of assuming personhood rather than asking that it be proven. Which is, if you think about it, the basis of the rule: Presume Competence. The one I just failed at so spectacularly.
As a skeptic and a scientist, I am loathe to believe things without ample evidence. I was raised with spiritual beliefs, albeit rather unusual and not particularly formal ones. Most of them did me no harm– some of them, I think, did. But nowadays I generally lean towards the notion that believing untruths is a bad thing, no matter how comforting they are. So I do not believe in a life after death, or that our pets have souls, or other such pleasing lies that we humans tell ourselves. And I was afraid that seeing Tangles as a person was one more such comforting untruth.
But what does my scientist brain really say about people like Tangles? Everything I’ve learned about neuroscience so far suggests to me that anyone with cerebral hemispheres and a neocortex (essentially, those whose brain has developed past the point of anencephaly) is capable of sensing, learning, and cognition (thought). It has also taught me that we lack the tools to measure the potential of that learning and cognition, and that medical science tends to err on the side of assuming people — especially disabled people– are less capable than they truly are.
I have seen so many examples– like Carly, like Fishy, like numerous personal friends of mine, like the extraordinary woman I met not long after meeting Tangles (I’ll tell you about her in a separate post), like the cast of the documentary “Wretches and Jabberers,” all of whom have proven the experts wrong and shown that they can think and learn and do far more than was thought possible. And in almost every one of their stories, there is a haunting question that hangs over me: How much more could they have done, and how much less might they have suffered, if only they had been offered the right tools and educations to begin with? If people had believed what they could not prove and presumed that these people had the potential to be something other than simple automatons, trained to do boring and basic tasks? How many more brilliant — or average– minds are wasting away now in institutions, or strapped to chairs in special education classrooms that don’t really believe they can learn? How many of them will never reach their potential simply because no one believes that they can? What if Tangles is one of them?
So let me conclude by saying that we should always, always, always err on the side of assuming intelligence, personhood, and unlimited potential. If we treat a person as though they have these things, and it turns out that they do not, then no harm is done. If we treat a person as though they do not have these things, and they do, then we have done terrible harm. So I will assume that anyone who is alive is a thinking person. And anyone who is thinking should be given every opportunity to learn, grow, and reach for the stars.
When I first met Tangles, as with every new disabled child I meet (really, I suppose it should be every child, period!), I made myself the following list of promises:
1) I will always speak to her as though she can understand me, no matter how little evidence I have to support that hypothesis. Additionally, I will speak to her with respect and courtesy.
2) I will always act as though she can understand anything I say in her presence.
Granted, I’m lousy at this one, in the sense that I tend to forget myself and swear around kids, or talk to their parents about adult topics that may not be appropriate. I may also talk about the child in front of them, but never, ever, no matter what, to say something negative or complain about them. Questions, praise, and purely factual stuff only, and even then, I probably do far too much of it.
Don’t underestimate the importance of this rule. Children already worry enough and blame themselves enough. Remember how you felt realizing that you made your mother cry or caused your folks to fight? Remember how much the things they said about you in moments of anger or frustration cut to your heart? Now imagine, on top of that, not being able to apologize, to ask for reassurance, or even to remind your dad that you love him. Think about what growing up that way could do to a child’s sense of self-worth. In the film “Wretches and Jabberers,” Tracey, who first learned to communicate by typing in his 30s, recalls that the first thing he typed was to tell his mother that he loved her. She cried. When I saw that part of the film, I cried too.
3) If she does not do what I ask her to, I will assume that she either cannot or has a reason why she does not want to (and that this reason is valid, whether or not I understand or agree with it.) While I may have to insist that she does something she doesn’t like, I will never accuse her, even in my mind, of being “badly behaved,” “non-compliant,” “stubborn,” “defiant,” “oppositional,” or “manipulative.”
I’ve known willful children– and I think, “good– they will grow up to be strong-minded adults.” All children have some inherent limitations in their abilities to be patient and thoughtful, due both to their inexperience with the world and to the fact that their brains are not yet fully developed. And all children are manipulative, for the simple reason that they have far less power than the adults around them, and so have very limited ways to gain access to the things they want and need. I know that children can acquire some very bad habits– such as selfishness, excessive impatience, and the tendency to whine or throw tantrums. I know too that bad habits in children are generally the result of their caregivers responding incorrectly to their wants and needs, including the need for limits, rules, and structure.
4) I will not force her to do anything, or do anything to her, without good reason. When I need to do something to her or make her do something, I will explain both what it is and my reason for insisting on it.
I think it’s a good list of rules. As I was about to find out, though, those rules are easier to write than to follow.
And as it has gotten to be 1:30 AM, I’ll have to continue this narrative tomorrow.
Last time I introduced you to a 10-year-old girl I call Tangles, who has ataxic cerebral palsy and mixed partial seizures, and diagnoses of global developmental delay and profound intellectual disability.
Here’s point one of my frustration about Tangle’s situation. I’ve described the kind of ABA therapy that Fishy [whose primary disability is also cerebral palsy] gets — an intensive, several-hours-a-day training program that breaks physical, social, and communication skills down into tiny individual steps and trains him in them, piece by piece, by rote, with rewards for every successive approximation of the “target behavior.” Essentially, if I may be crude, animal-training tactics applied to people. The best non-academic primer on ABA you could read is probably Karen Pryor’s “Don’t Shoot the Dog!”
[EDIT: A good friend just yanked me aside and pointed out that the language I just used is triggering. Let me see if I can briefly sum-up why before continuing. I used the "dog training" metaphor for ABA because I think most people are fairly familiar with how animal training is done. Oddly for me, I didn't consider the implications that would have for most people, namely:
- Disabled people are compared in often intelligence and ability to animals. THIS IS NOT OK, ever, nor is it ever accurate. A human being is a human being, period. (The question of when they become a human being is part of a very different set of discussions I've been having about abortion rights. Nothing is ever simple.) Ironically, one of the other posts I'm working on writing addresses a time I caught myself thinking something along those lines and was horrified at myself.
- Drawing the parallel between ABA and animal training reinforces the truly screwed up notion that adults, particularly professional adults, have an innate right to the authority they tend to wield over people with disabilities and children in general. Anyone who has ever been a child should realize how problematic that assumption is. No one deserves that kind of power over anyone else. And no one should ever mindlessly obey another person.
- The implied comparison between disabled people and animals makes people forget that there is always a reason (and almost always a good one at that) why people do the things they do. When I took a class on behavior modification in college, a lot of focus was put on the "Analysis" part of ABA. They told us to ask "what purpose does this behavior serve?" and "why is the person doing this?" first. Apparently, that bit has been thrown out the window by most ABA therapists these days, who just go around trying to change the behaviors of their clients without ever trying to understand them first, dismissing anything they dislike as Failure To Cooperate or similar. To the best of my knowledge, this constitutes Doing It Wrong.]
ABA is a therapy whose name triggers horror and fury in most autistic people, and for good reasons (many of which are nicely explained in the blog post “Quiet Hands” — and a more academic review of why it may be a really bad idea is: http://gernsbacherlab.org/wp-content/uploads/papers/1/Dawson_AutisticLearning.pdf).
I don’t think it’s always a bad therapy, even for autistic people, and it can be done in much better ways than what Julia describes [EDIT: I won't condemn the theoretical basis behind ABA-- I think it can be a useful tool, as I discuss here. What's wrong is HOW it tends to be used-- to try to make autistic people act and appear neurotypical, which is very, very wrong. But it doesn't have to be used that way] (for those further interested in a situation in which behavior modification had a more positive outcome, the landmark case of using operant conditioning methods to help a human subject is detailed in the incredible documentary “Harry” — note, “Harry” takes place long before ABA was developed).
But for Fishy, this therapy is perfect. For someone who struggles to master basic physical skills– the very simplest skills like pointing and moving that will be his gateway to independence and communication and self-empowerment– breaking those skills down to small manageable pieces may be the best, maybe even the only, way to teach them without the child giving up in frustration.
And Tangles, I found out, doesn’t qualify for this therapy.
Because she isn’t diagnosed as Autistic.
I raged for several days straight at anyone who would listen when I learned this. How can this therapy be covered by insurance for people it damages and not covered at all for someone it would help so much? What is wrong with the world?
I don’t know if Tangles is on the spectrum or not, but I know the option was summarily dismissed by whoever evaluated her because she seems to enjoy engaging socially. As if that were an exclusion criterion.
Fishy, who is anything but autistic, was able at a very young age to get an autism diagnosis everyone knows isn’t correct, probably in large part because his parents both have PhDs in psychology and a lot of contacts in the world of medical professionals. I’ve spoken to Tangles’ mom a little about whether it might be good for her to seek a doctor who is similarly willing to game the system and give Tangles an autism diagnosis so that ABA can be covered for her too– because Tangles’ mom, unlike Fishy’s family, couldn’t possibly pay out of pocket for those services if insurance won’t. At the same time, I worry that an autism diagnosis might limit her options in other ways and put her at risk of suffering the more abusive aspects of ABA.
On the other hand, she’s already at risk of a lot of getting a lot of abuse in the name of care. Much, much more about that later.
So what has been done for her so far? Not enough.
At age 10, she has only just recently started receiving music therapy and speech therapy. Some attempts were made previously to teach her sign language and PECS (I don’t know when or for how long)… but at the time, she probably lacked the manual dexterity to use those methods even if she understood them.
At age 10, she’s only recently been moved to a school that is teaching her to willingly sit still for periods of time instead of strapping her to a chair. I felt sick hearing that. Please note: I don’t blame her mother for this at all– how can a woman caring for two children alone and without even a college degree possibly have the resources to fight the system? Especially since she is still trying to learn what help her daughter actually needs? She’s doing the best she can, but Tangles is probably going to need an entire team of experts and advocates. Fortunately, I think I can start putting her mother in touch with those kinds of people.
It isn’t too late for this sort of intervention. But it’s later than it should be. Why has it taken so long? Well, for starters, because presuming competence (a term used by the autistic community to remind people that lack of speech does not imply lack of intelligence) is easier said than done. In the following entries about Tangles, I’ll go into this in more depth as I take you on a tour of my experiences with this girl and how my views about her are gradually evolving. I see things in her now that I couldn’t possibly have seen when I first met her. And I know I still have a lot to learn.
I have a new client for whom I’ve been providing occasional respite care for the past month, and she has taught me so much that I don’t even know how to start putting it all down. She is a 10 year old girl who lives with her mother (currently pursuing an undergrad degree in psychology) and younger sister, age 6. She’s brought up more questions than I know what do with, and I’m still a long way from understanding her and how to help her. A lot of my questions, though, are along the line of “why don’t we have better ways, as a society, of providing children like her with the assistance and support she needs?” I have part of an answer, and it’s a disquieting one.
But let me back up a bit.
I’ve also held off blogging about her until I could come up with an appropriate nickname. I planned at first to call her Princess and her sister Cheerleader (for reasons explained below) but I worry that those nicknames may spark some sibling rivalry if Cheerleader hears them. So instead I’m going with Curls and Tangles, as the younger girl has gorgeous corkscrew curls and the elder has more loosely curling hair that is always coming out of its braid and getting in her face (like mine!). I also think that the ordered/disordered contrast between the terms nicely mirrors the relative fluency with which the two girls are able to interact with their world so far.
Here’s what I wrote the night after meeting them for the first time [current thoughts/corrections are in square brackets]:
Princess [Tangles] is 10 and has [let me change that to "is diagnosed with," as her mother and I are increasingly convinced that at least item 3 of the diagnosis is inaccurate] ataxic cerebral palsy, global developmental delay, and profound intellectual disability ["mental retardation" formally speaking, but most people with that condition consider the R-word extremely offensive], all of uncertain etiology [i.e., no one knows why. She also takes medication to control mixed partial seizures and is given a sedative as needed for anxiety that shows itself in mildly self-injurious behavior-- more about that later]. Cheerleader [Curls] is 6 years old and typically developing. Not surprisingly, to anyone who knows me, I like Princess’s company a lot better than her sister’s, though objectively speaking I seem to get along with them both equally.
Both are very lovely girls. Cheerleader is still small enough for me to lift easily (I spent a while entertaining her by carrying her around the apartment on my shoulders), with an engaging smile despite missing front teeth, while Princess is more robust in build (and no, I’m not using that as a euphemism for overweight — she’s just a lot sturdier) and appears to be on the verge of puberty. Both are cheerful and rambunctious, and enjoy bouncing on and off the sofa.
Cheerleader is named such because she does in fact do cheerleading, and is constantly showing off gymnastic moves to me. Princess, like her title historically implies, is a beautiful and well-cared-for girl who doesn’t know how to do many things for herself, and stoically submits to her sister doing her hair and otherwise rearranging her physically. (I made the mistake of letting Cheerleader “style” my hair, too, and later had to spend ages untangling it.)
Princess does not yet use any standardized method of communication, although she appears to understand the basics of what’s going on around her. Her cerebral palsy strikes me as mild, and isn’t immediately apparent in her behavior. She can handle toys and other objects relatively well, though her hands have a constant tremor to them. She seems to enjoy vocalizing (sometimes with startling excited shrieks), though she uses a limited range of phonemes and doesn’t seem to use speech with intent to communicate specific meaning but rather as a form of play and emotional expression [the fact that this was my impression on my first visit but not later makes me wonder if she is reluctant to try communicating with strangers... or with people who assume she isn't very bright]. She likes music and will make repetitive sounds in rhythm to a beat.
Cheerleader, like many typically developing children, chatters virtually nonstop, and requests my constant verbal and visual attention. I find this exhausting, as I dislike attending that constantly, especially in more than one sensory modality at a time. However, I remember from my own childhood the emotional importance of feeling attended to, so I try to balance giving her as much attention as I am capable of while being firm about rules and my need to give equal time to Princess. I almost invariably feel at a loss for appropriate verbal responses to Cheerleader’s chatter, but she seems more or less satisfied with my attempts, inane as they sound to me.
And then I stopped, but I can’t remember now if I ran out of knowing what to say or just the time and energy to get it down. Probably the latter.
And so I’ll break here for a new post.
Thanks to Dr. Nightengale of Samarkand for reminding me. I didn’t think of a specific post for today, but in a way, every time I write a post on this blog, it’s an instance of blogging against disableism. I also have in mind a post or series of posts I wanted to write today anyway, whose topic(s) dovetail nicely with today’s idea. Without further ado, I’ll get to work on those. Hope you’ll take that journey with me!