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.