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Making Mistakes

(Sorry for the length of this post!)

My first few times babysitting Tangles (10-yr-old girl with global developmental delay, possible autism, ataxic cerebral palsy, and seizures) made me realize just how new I am at all this. I made mistakes, lots of them. I learned a lot, too.

The first hurdle was changing her diaper. I’ve changed Fishy, who is super-cooperative– lifting his legs for me and generally helping out as much as he can. I’ve also changed a typically-developing toddler who fights it every step of the way, screaming, grabbing for anything in reach, flipping onto his stomach, trying to run away the instant the diaper is off, sticking his hands into a dirty diaper if he can– a real handful.

Tangles’ mom demonstrated the changing procedure for me, once, before she left. She put her hands on her daughter’s shoulders and said “down!” and Tangles politely lay down on the floor and stayed still while mom mimed a diaper change. So, when getting Tangles ready for bed, I put my hands gently on her shoulders and said “down, please!” She just stared at me. I pressed down a bit, repeated the request in a few variations, told her it was time for a change, asked if I could change her diaper, etc.. No response. I started to worry.

Curls bounced over to us. “I can help!” she said. “Ok!” I agreed, assuming she knew something I didn’t about the exact right tone or phrasing to use, or something like that I was missing. Instead, she tackled her sister around the waist and tried to pull her to the ground. I stopped her quickly, imagining the much larger Tangles toppling over and squashing her little sister completely. But now I was at a loss.

I wheedled and pleaded. I tried using a commanding tone of voice. I held Tangles’ hands and gently explained that this was important. I pushed on her shoulders a little harder. No luck. I began to panic a bit. Silly as it may sound, it hadn’t actually occurred to me before that I might ever have to force one of the kids I work with to do something. I had this ridiculous image of myself as the Disabled Child Whisperer, always capable of getting the response I wanted through patience and good humor.

***

I’m sensitive to the difference between discipline and abuse, and to be honest I tend to lean away from discipline as well. I believe in enforcing rules and structure, but not in punishing children for the fact that they don’t have much self-control yet. The kids I work with are incredibly eager to please (well, apart from the one typically-developing toddler!), and I’ve never seen them do anything “wrong” on purpose. They make mistakes and I correct them, but I’ve never seen malicious or senseless behavior, and if they balk at doing what I want them to, I tend to assume they have a good reason and try to figure out what it is before moving forward.

I’m aware, too, of just how scary it can be for a child to be manhandled by someone bigger and stronger than they are. I hate the thought of overpowering a child, particularly a disabled child. They have little enough control in their lives as it is.

I also hate the thought of children being trained to be utterly obedient. This is, I learned recently, one of the primary reasons people with intellectual and developmental disabilities are at such an incredibly high risk for sexual abuse (something like 80% of these women and 60% of the men experience sexual abuse—and 90% of those endure more than one instance, with more than one abuser)—they are taught to do what they are told, without question, and are never taught that they have the right to control their own bodies and what is done to it.

I sat down with Tangles’ mom one night to discuss this, because I am scared for her. Tangles is, statistically speaking, in the highest possible risk demographic for sexual abuse. Fortunately, her mother is a strong woman, intelligent, and well-educated, which mitigates that risk. Tangles is a beautiful child and I hate to think about anything bad happening to her. But making sure that it doesn’t is going to require vigilance and much education for everyone involved in her care.

***

So, in a way, I was relieved that Tangles didn’t just trust me right off to undress and change her. On the other hand, I felt it would be irresponsible of me as a caregiver to let her go to bed in a soiled diaper. I also didn’t have much time and space to think—I had two rambunctious girls on my hands and it was already past their bedtime. Finally, to my relief, when I took her hands in mine, Tangles leaned back, putting her full weight on me (just playing, or trying to control the situation? I wondered), and slid down to the floor.

When I went to take the diaper off, she knocked her head against the ground—not hard, but deliberately, obviously telling me she wasn’t entirely comfortable with the situation. I promised myself that in the future, I’ll have a trusted caregiver oversee the first time I help a child with their intimate needs, to reassure them and to make sure I’m getting it right.

Then I broke another rule by saying one thing and doing something else. I apologized to Tangles for making her uncomfortable, but kept doing the thing I knew she didn’t like. I even told her that she was absolutely right, that no one should take her pants off or touch under her diaper without her permission, but the words were hollow because I was insisting on doing exactly that. I felt horrible, even though I talked to her throughout, step by step, letting her know when I was going to wipe, roll her to the side, etc., so that at least nothing I did would take her by surprise.

In addition, there was yet another problem I hadn’t prepared for—I wasn’t sure if I knew how to do this right! It’s been over a decade since I changed a girl’s diaper, and that was a baby. Now I was faced with a near-pubescent girl, and, in the midst of trying to figure out how to reassure her, my mind was racing with practical questions—did I remember to wipe front-to-back only? Am I wiping too hard? Not hard enough? It feels so different from when I’m wiping myself. Are the wipes too cold? How do I get the clean diaper under her when she’s too heavy for me to just lift her lower body? Am I hurting her physically or is she just emotionally uncomfortable? How would I know?

She didn’t fight me at all—I think I would have given up if she had, and called her mother– and made no protest other than those gentle head-bangs, but I still considered the situation unacceptable, and promised myself I’d never let something like this happen again.

***

Unfortunately, my troubles weren’t quite over yet. My instructions from mom were to get the girls changed into night-clothes before bed. At this point, I should have skipped that, but I was too frazzled to think beyond following the steps that had been laid out for me. So here I had just finished traumatizing this poor girl by changing her when I was still nearly a stranger, and a few minutes later, I was trying to take off her top, too.

She bonked her head against me, and said something that sounded like “oh!” or “oof!”—obviously a “No!” I took my hands off her, explained what I wanted to do, and tried again. More head-bonking. I asked if she wanted to do it herself. Bonk! I pointed out that her sister had just let me change her into a nightie. Bonk! I reached for her again and she put her hands flat against my chest and pushed me away. I let her.

She tried to run past me out of the bedroom, and I realized I’d screwed up again—I didn’t want to restrain her, but there was still broken glass on the floor in the living room where she’d knocked over and broken a jar earlier, so I couldn’t let her just run where she wanted, either. I compromised by letting her push me backward down the hallway, so I could let her feel in control and still make sure she didn’t go anywhere dangerous. At one point, she moved her hands up to my neck rather than my chest, and I froze in horror—not afraid of her choking me, but wondering where she had learned that, if she was imitating something someone had done to her. I still have no idea, but the thought gives me chills.

Once she realized I wasn’t pushing back, she calmed down. Finally, she let me take off her top and slip a nightgown over her head. Her sister helped her into bed and I rubbed circles on her back. As suggested, I gave her a book to hold, which she chewed on and tore at while I read to her sister. I tucked them in, and gave Tangles a stuffed animal to snuggle with. And then I went off to clean up broken glass and revise my opinion of myself as someone who knew how to handle disabled children.

***

Our relationship has gotten so much better since that night—I’m now not only “trusted” but firmly in the category of “favorite people.” She’s still not always thrilled to have me change her, but I suspect other factors are involved, since she seems thoroughly comfortable with me in most ways, including letting me help her bathe. I’m sorry that learning my lesson had to involve distress on her part, and I hope that I deserve her forgiveness for my mistakes, and for sharing a story about her that contains such personal information. I write these details only in the hope that my experience will end up helping others understand how to be more appropriate with the children (or adults!) they care for.

Things That Are Difficult to Say: More about my first impressions of Tangles

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 my 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.

Recently 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 news 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 unsure 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 and brilliant conclusion: we can’t prove that an android is a person. But neither can we prove that a human being is a 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, though not much in the way of religious dogma. 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 usually a bad thing, no matter how comforting they are. And I was afraid that seeing Tangles as a person was merely a 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 the experts 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, worthy of the same respect as any other. Because anyone who is capable of thinking should be given every opportunity to learn, grow, and reach for the stars.