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Interlude – “special” people

June 23, 2013 1 comment

Sometimes I see parents, educators, and others who love and work with disabled people (and especially disabled children) refer to those people with disabilities as “special” in some religious or spiritual sense. This notion has been around a long time: there is evidence that in many cultures and faiths, dating back beyond recorded history, people with epilepsy, schizophrenia, and many other physical and neurological differences, have been worshipped, revered, seen as having a unique connection to the divine, etc..

These days, I most often see people referring to autistic children, for example, as lessons to others, or as having special spiritual qualities, or being more angelic than other children, and so on. I know it is meant well, but there are problems with this viewpoint. While I certainly prefer this opinion to the notion that disabled people are worthless, burdens, disposable, or even a threat to the future of humanity (as many eugenicist still argue, despite ample counter-evidence from the biological sciences), I still feel the need to speak against it. Here’s why:

1) It puts a lot of pressure on the person in question, whether child or adult. Not only do they have to deal with being stared at, avoided, pitied, and misunderstood, but in addition to that, they are expected to behave in a way that is beyond reproach. In reality, however, children with disabilities get cranky, misbehave, and have bad days. People with disabilities can be as mean or petty as anyone else. They get angry and sad and jealous and selfish, just like anyone else.

2)  This leads me to the second point, which is that, no matter how big the differences in how they look, think, function physically, or communicate, people with disabilities are more like everyone else than different, and they deserve to be treated as such. To consider them otherwise — even in a reverential way — is to do them a grave disservice.

I don’t usually express myself in religious terminology, but if I were to do so, here is what I would say: People with disabilities are neither angels nor demons, neither possessed by evil nor unusually touched by the divine. They are human beings, and like all of us they have hopes and fears, dreams and dreads, petty concerns and big questions. The life of an autistic child is no more nor less sacred than anyone else’s. No people with disabilities should be placed above or below the rest of us. They are simply people– all individuals, all with the potential to do great or terrible or mediocre things with their lives, but no better or worse than any other person simply by virtue of being disabled.

3)  One more point: sometimes, those who love disabled people see how much they suffer and struggle, and feel that it is only fair that in return for this undeserved pain, they must be given some kind of gift as well. Most of us know, somewhere in our hearts, that life is rarely fair, but this doesn’t make it any easier for us to understand why some children should be born into lives that are so much tougher than others. Our world can be a cruel one: children are born into war, into poverty, into families that will hurt them, or into bodies that must work so much harder to keep up with others.

But to see disability as inherently tragic is also to do a disservice to the disabled. The fact that disabled children are more likely than others to be abused and abandoned is a societal problem, not a fault of disability. The fact that so many people with disabilities end up poor, uneducated, and struggling to support themselves is also a fault of the world they live in, not the body or brain they were born with.

Some disabilities cause physical pain, it is true. But far more often, they pain they cause is emotional– and avoidable. Some disabilities result in a shorter life, it is true. But very few disabilities necessarily result in a lower quality of life. Don’t take my word for that, please, and don’t take it for granted that I am obviously wrong. Instead, listen to the only people who can truly answer that question one way or another: those who have spent their lives being disabled.

If we truly want to respect and help people with disabilities, we should not see their disabilities as inevitable burdens and pray that they be compensated accordingly. Rather, we should all work for a world in which the disabled are truly included and accepted, a world in which being disabled does not carry stigma or cause undue hardship. Every human being deserves  respect, care, and a fair chance to make the very best of the life they live. And until we offer these things to every person in equal measure, we should not look to any power beyond ourselves.

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.