I haven’t written much here lately. In part because my general brain energy has been at a low ebb, and partly because it’s gotten harder. Looking back at my older posts, sometimes I feel sad at how they now feel naive and optimistic in some ways.
My job has gotten harder. Not because of the clients, but because of the rest of the world. Parents, therapists, siblings, barriers and obstacles, institutions of thought and culture and society… And it’s much harder to write about my work when I have things to say that aren’t as positive. Sharing the good times is easy. Sharing my mistakes feels useful to myself and others. Sharing my good ideas is gratifying. Talking about the hard parts is… hard.
I know the parents of my clients love them greatly. I know these situations aren’t easy for anyone involved. But I need to write the following letter. I’ve been needing to write it for a while now.
A quote comes to mind: “The names have been changed, but the stories are real.” The following was inspired by many situations, with many different children.
Once, while jumping, you accidentally head-butted me so hard that my jaw throbbed for a week. Hearing an adult call you “stupid” in a moment of anger hurt worse….
…You bit me, hard enough to bruise, and while the other adults clustered around asking if I was ok, I was worried about you, and what could have made you miserable enough to injure me…
…You frustrate me at times. You throw tantrums, throw objects, break things, hit and kick. I’ve lost my temper and yelled at you on more than one occasion. But nothing you’ve ever done has made me as angry as when your sibling wished– out loud, in front of you– to be an only child…
…You’re rougher than you mean to be, and your clumsy attempts at friendly interaction have made me wince all too often. What feels worse, though, is the fact that I wince or flinch against my will– I don’t want you to know that you hurt me, because I know you never mean to. I’d happily suffer more pain to see you smile…
…Once, after a therapy session, you punched me in the stomach for taking away the cookies. Your small fist didn’t hurt me. The pain and frustration in your eyes, however, left a wound that still hasn’t healed. I would rather be punched again than see you cry.
All of you: you have my sympathy, you have my unconditional love, and you have my complete forgiveness for any injury you have ever caused me. And you always will.
[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D
I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.
If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.
(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)
I am a disability-positive person. I see beauty in human diversity, and believe there is great value in the varieties of body and mind and the great wealth of experiences that ensue from those differences. That being said, I don’t always see disability through rose-colored glasses.
Depression, like chronic pain, like most chronic illness, is one of those disabilities that’s hard to live with no matter how well it is accommodated. In fact, depression is not only a chronic illness, but also a form of chronic pain. The weight that sits in my chest may be metaphorical, but the pain is real, and at times even physical.
Yes, it would be nice if I didn’t face stigma and misunderstanding, but in my own life, those problems have been relatively minor. At best, I might have been diagnosed and started medication a few years earlier. No one has ever really been cruel to me on account of my mental illness, and no one has ever taken my freedom or any other of my rights away because of it. In this, I know I am lucky.My battles are not the same ones that many disabled people face.
Depression makes it hard for me to accomplish things, have ambition, follow my dreams. It means I’m often years behind on things like routine doctor’s visits, and other things that adults are supposed to do regularly. It’s the reason I only have a B.S. at this point, not a PhD. It’s why I work part time for barely above minimum wage, and have always worked for far less than I am worth. I am lucky– very lucky!– that I have always had other resources to fall back on, and am not living in poverty. I am lucky I have not had to file for disability status– many of us with mental illness and chronic fatigue fall into the cracks in the system because we lack the energy to even do things like file the paperwork for the help we need.
But even if money arrived on a silver platter and doctor’s visits came right to my door, at least to some extent I would still be suffering, and not in a way that anyone could do anything to change. I do suffer– SUFFER– from depression. I use that terminology very deliberately. Depression hurts. Chronic fatigue hurts. They hurt most of the time. Sometimes they hurt almost unbearably. They grind me down, hold me down, wear me down. They make it a struggle to get up in the morning, to eat, to breathe– never mind things like keeping friends and finishing college. There are times– so many times– when all I can do is curl myself into a little ball around the pain and whimper. I lose a lot of time that way.
What to do? More medication? Different medication? Maybe. Each comes with its own side effects and risks, and not always obvious ones, either. A myriad of other suggestions– from polite to aggressive– beseige me constantly. They range from utter nonsense to pure common sense, from free and easy to massively expensive in money or time/energy. The one thing most of them have in common is that I lack the energy to even attempt them. At least here I’m in a holding pattern, treading water– maybe not doing well, but functioning at a level I can survive with. And that’s no small thing. I do fear losing that balance. As hard as I find life right now, I am living and breathing and moving forward. I may not be doing well, but I don’t think I could stand to be doing any worse.
All this being said, I live well with depression– really! A lot of it is luck– like I mentioned, I’ve never truly struggled financially, I have plenty of good friends, my life has been remarkably free of major tragedies and other situational causes for depression– and (believe it or not), my personality is a pretty happy one. It’s an odd combination, actually– I’m a fairly cheerful, optimistic, fun-loving, easy-laughing, moderately-positive-thinking, stop-and-smell-the-roses kind of person… who just happens to spend a lot of time in intense emotional pain over absolutely nothing at all. Depression is a really weird thing when you get right down to it. It made far more sense when I was an angsty teenager with no romantic prospects– being miserable, cynical, and bitter meshes well with clinical depression. At that point, I had no way to know I was suffering from an illness; it made sense to be unhappy. But having trouble getting up in the morning when you have a pretty awesome life is harder to understand, even when you’re the one experiencing it.
A doctor recently gave me one of those depression rating scales to fill out. Then, after talking to me, she said “You know, you have a pretty great attitude for someone who scored this high on the depression scale!” I laughed and told her “I’ve had a lot of practice.” And it’s true that the mental tools I’ve developed to help me cope make a huge difference. They don’t lessen the pain, but they allow me to keep going in spite of it. Many of them are simple practical tips– get enough sleep, eat every day, don’t make any major decision while feeling depressed– and others are more like mantras, things I wouldn’t accept anyone else saying to me but I need to hear– like “remember, your brain lies to you,” and “it’s only pain– it can’t actually kill you,” and “it won’t hurt any less if you give up and collapse, so just grit your teeth and keep going.” I suspect everyone’s the little phrases are different. Some of mine are pretty weird, too. But you tell yourself whatever you have to in order to keep going.
My body hurts. I’m tired, and tired of being in pain. I didn’t get nearly as much done today as I wanted to, although I did accomplish a fair amount. I’m not looking forward to going to bed because I know I’ll be even more tired in the morning. And I meant to spend this time catching up on writing book reviews, but oh well, I suppose I needed to write this too. I wish I had more time– no, more energy– energy in a day: the time is there, but I can’t use it.
And I can’t think of how to end this, so….
My apologies for the length of this post.
How do we teach children what they need to know in life? What do they need to know?
They need, at some point, some measure of self-control: the ability to delay gratification, to think before acting, to modify aggressive instincts, to consider the well-being and desires of others, and to endure things that are boring or yucky or uncomfortable, from sitting through class to going to the dentist.
Observe the average 18-30 month-old child, and you will see what people are like without this control. Toddlers are 90% “id” — desire unmodified by conscience or inhibition. They grab what they want, become violent toward anyone they disagree with, and refuse to cooperate with anything they dislike. You can’t function in society this way. (Well, you can, but you have to already have a lot of money and/or political clout, and you certainly won’t have many friends).
At the other end of the spectrum is the person who has been trained to completely sublimate their own will. As a society, we consider this more acceptable, even necessary at times. Anyone who joins the military steps into this role– choosing to follow another’s orders above all else. But that is an adult’s choice to make, with adult reasons for doing so. There’s a reason why you have to be 18 to enlist. Brainwashing children to do nothing more than follow orders is abuse.
Finding the middle ground is hard, even with typically developing children. Cultures and experts disagree about when and how to discipline children, and about what level of self-control they should be expected to have at what age (either physical, such as toilet training, or psychological, such as not talking out of turn).
Ideally, I think the modern-day parent imagines explaining every rule and its reason clearly, and the child responding “Oh, that makes sense” and following the rules from then on. But anyone who has spent any time caring for a child knows that this very rarely occurs. Inevitably, one is faced with a child who has preferences that are incompatible with their own well-being (e.g., refuses to eat healthy foods), the well-being of others (e.g., refuses to share), or the general necessity of a given situation (e.g., won’t follow classroom policies, won’t get in the car when it’s time to go, etc. etc. etc.).
We want, at least in this day and age, for our children to have minds of their own. But we also want them to comply with the majority of our wishes. Somehow, we have to find a balance.
When your child does something wrong, do you slap them? Yell at them? Reprove them gently? Order a time-out? Restrain them physically? Options get more complex as children get older. They can be sent to the school principal, grounded, given detention, required to apologize or otherwise make reparations, assigned more responsibilities, stripped of privileges, guilt-tripped, spanked, publicly humiliated, and so on. And although many parents insist they know exactly how to fix their children’s misbehavior, I won’t believe that until I meet a child who behaves perfectly… and then I’ll just think I’ve run across some sort of “Stepford Wives” style of mind control.
The science of behavioral psychology can help. We’ve demonstrated, for example, that children mimic what they see and hear. The injunction “do as I say, not as I do,” is probably the most useless phrase ever used in child-rearing. So if we want nice children, we should be nice people. But we also know (perhaps more anecdotally) that doormat parents bring up children who walk all over them (and everyone else). Being nice doesn’t do the job alone; you need structure and rules.
We know that rewarding desired behavior works better, on the whole, than punishing unwanted behavior. If kids hear “no” constantly, they start to tune it out, unless you manage to break their will completely. But punishment has its place too– if you ignore your child punching other children to get their toys, that behavior is not going to just go away on its own. Unless the other kids beat up your kid and they learns their lesson that way. Letting your child learn from the consequences of their mistakes is a good strategy in some cases, but not in all. You don’t just let your kid jump off the roof to find out that they’ll break a leg.
I think we can all agree that, at some point, too much or too severe discipline becomes abuse. We know that abuse does not have to involve physical harm, just as mockery and the silent treatment are genuine forms of bullying. But we can’t seem to agree on how to bring up good kids (any more than we can agree on what to do with adults who break the rules).
It’s even harder to know how and when to discipline children with developmental disabilities. It would be abusive to teach them nothing, and just let them do whatever they feel like all the time. Every person deserves the opportunity to work hard and improve themself; this is something human dignity demands of us. Every person deserves to be taught to be as independent as possible (note: independence is not self-sufficiency. Being able to decide what food will be placed in your mouth by an aide is as much an act of independence as being able to feed yourself). And every person deserves the opportunity to interact with others, to be a part of society.
It is on this last point, I think, where we get a lot of the disagreements between the disability community and certain parents and therapists of disabled children, particularly those on the autism spectrum. These parents and professionals assume that, in order to have good opportunities in life (social, educational, career), the disabled child must be taught to hide as many markers of their disability as possible.
Now, it is true that societies are largely unaccepting of those who break social rules and mores. So rigorous programs are put in place to teach autistic children everything from “keep your pants on in public” to “say please and thank you” to “don’t drool” to “don’t stim” to “make eye contact.”
And somewhere in there, well-meant intervention becomes abuse. It becomes “Quiet Hands” and pathologized childhoods. It gives the messages, however unintentionally, “don’t be who you are” and “you do everything wrong.” It results in teens and adults who are depressed and self-hating and feel guilty for their every instinct, habit and preference. People who don’t know that they have the right to say “no” even when someone is doing something terrible to them. Their whole lives have been a constant litany of others telling them what to do, how to act, what constitutes friendliness, when to smile– how can they trust themselves, or even know their own mind, after all that?
But how do we determine which things are worth teaching? I counsel parents to forget about their child looking or acting “normal” and focus on them developing self-determination skills, but somewhere in there, kids DO have to learn to keep their pants on in public or they won’t be allowed to go to school. Or someone will call CPS and claim that letting children run around without pants is a form of sexual abuse, because nudity is such a serious taboo in our culture.
It’s important, as I’ve written before, for children to be able and allowed to say “no” at times. Two of the most important stages toddlers go through are “no” and “why?” Saying “no” asserts a sense of selfhood, the understanding that it is possible to have one’s own preferences and to control aspects of reality by expressing those preferences.
“Why?” occurs when children contrast their newfound independence with the fact that they cannot always control what happens to them. I believe that the question “why is the sky blue?” is not just idle curiosity, it is shorthand for “help me understand why I cannot make the sky be any other color.”
When children with developmental disabilities refuse to keep their pants on, we need to ask why. Perhaps they are reaching the “no” stage later… or the “why” stage. Because these children often can’t verbally ask “why,” no one thinks to offer them explanations, and their questions about the world go unanswered. Taking off the pants may be a way to ask “why do we have to wear pants?”
Or it may be a protest, to something related (maybe the child wishes to be toilet trained) or unrelated (the parent refused something the child wanted, so the child refuses something the parent wants). Often, parents of a disabled child assume that the child either fails to understand the rule “pants on in public” or is simply being obstinate. But it’s very important to establish what’s actually going on.
Chances are, the kid understands the rule—most developmentally delayed children understand more than is immediately obvious. Is the child then objecting to pants for the sake of objecting, or because there’s a sensory sensitivity issue? The first may call for some form of discipline; the second for finding a different kind of pants.
There are those in disability rights circles who think we should also take this as an opportunity to challenge the very concept of pants and view them as a source of oppression. I don’t disagree on principle (why should anyone be forced to wear pants anyway?), but change is slow. For now, if you want to go out in public, you have to wear pants of some kind. Or perhaps leggings or shorts or a skirt. If there is a battle of wills between parent and child, offering choices may allow the child to feel heard and result in cooperation.
There are hard choices involved in teaching and disciplining a child with certain disabilities. How do you help a child develop independence and self-confidence when the majority of things they do are “wrong,” even dangerous? How do you ensure that they have time to just be themselves while also making sure you provide them with enough training that they will be given as many social and educational opportunities as possible?
The beautiful girl I call Tangles provides a good illustration of this point. Tangles is 10, with diagnoses of global developmental delay, profound mental retardation, ataxic cerebral palsy, and possible autism. Her mother and I agree that she’s smarter than most people think, but so far she’s got very limited ways of expressing it.
She’s very friendly, and likes to approach people and animals and touch them. The problem is her ataxia, which means she has trouble controlling or stopping a motion once she initiates it. The result is that when she reaches out to get someone’s attention, she doesn’t touch them; she hits them. And she’s pretty strong for a 10 year old girl. Her attempts at “hello” are sometimes rough enough to make me wince.
Her family is used to it. Her mother corrects “gentle, please,” and “careful, honey” again and again. When I’m at the playground with Tangles and her younger sister Curls, Curls apologizes on Tangles’ behalf: “she doesn’t mean to,” and “she doesn’t understand what she’s doing,” and the kids they play with regularly seem to have simply gotten used to being smacked on occasion.
But this isn’t a sustainable solution. Tangles is getting bigger and stronger. If she hurts someone badly by accident, or even gets past the age where adults are comfortable shrugging her actions off, I worry that she’ll end up being restrained or sedated regularly. I can’t bear the thought of seeing that happen to this vibrant and loving girl. So somehow, for her own sake, she has to learn not to hit.
I suspect most behavioral therapists would train her simply to keep her hands down, to not touch others at all… but that would be punishing her for reaching out and trying to interact. What a heartbreaking notion. What if it kept her from wanting to socialize at all? I can’t help feeling there must be another way.
I often remind her (usually right after she’s managed to thwap some poor startled person before I could grab her) that it’s not OK to touch strangers who aren’t expecting it, to touch little babies, to touch people without their permission. I don’t know how well she understands. I remind her to reach for people’s bodies rather than their faces. We work on “gentle touching,” having her stroke her hand along my arm rather than striking out in a slapping motion. But I think often she simply acts on impulse, forgetting to follow the rules that she does know intellectually.
The other night she hit Curls in the eye. Curls usually responds to her sister’s slaps with a mild scolding, and occasionally hitting back, so when she starting sobbing, I knew Tangles had managed to hurt her worse than usual.
“No! Don’t hit! Not in the face!” I reminded her. She was already wandering off as I continued exhorting her to try and be more gentle, and a casual observer would think she didn’t notice, let alone care, that her sister was crying. Her face was serene, and she continued with her normal activities.
But then I heard her saying “oh-oh” (her version of “uh-oh”), which is something she says when she’s upset, and I knew she understood what was going on and was bothered by it. She’s still officially “non-verbal,” and it’s relatively rare for her to actually try and say something, so I knew this was a big deal to her, too.
“Oh honey, I know you didn’t mean to hurt her,” I told her and gave her a hug. Then I went back to comforting Curls and applying an ice-pack to her face… but my deeper sympathies were with Tangles, who doesn’t even have a way to tell her sister that she is sorry.
How many things, I wonder, does she feel bad about without us knowing? How much does it hurt when we scold her over and over for something she doesn’t mean to do in the first place? Does it hurt her to hear people say that she doesn’t know any better, when obviously, she does know and is trying to improve? How do we teach her all the things she needs to know without convincing her that she is a broken human being in need of constant fixing? How do we support her desire to interact with the world while trying to change the way she does it? I can only hope we’re on the right track.
(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.
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 later introduced a variation on it that she enjoyed, so now she and I have our own version).
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 toilet 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 ataxic cerebral palsy is 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 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.