I hope last night’s post comforted, or at least spoke to, someone. I’m going to get back to my regular plans for posting now, but this next post kind of goes along with the previous one.
We’ve already covered that doing things like shooting 26 innocent people–or killing or hurting anyone–is always wrong and inappropriate, and in cases like the Newtown shooting, disability of any kind is largely off the table. (I know there are probably cases where it would be taken into account, but let’s keep this somewhat general). And as we’ve discussed before on this blog, if a child with a disability does something wrong, purely because it’s wrong (not, for example, to try to be heard because he or she hasn’t been taught another form of communication), then consequences need to be considered and used. But having said all that…
I have to wonder if society in general has put too much pressure on people with disabilities to be “socially appropriate.” What I mean is this. From the time they enter school–and often earlier–children with disabilities, especially ones like autism, intellectual disabilities, and even physical disabilities that may have a cognitive component, are told that certain actions are not “socially appropriate.” Their IEPs, IFSPs, and what have you, spend countless lines talking about what these kids do that is “inappropriate.” And because of some ridiculous policies, such as kids not aging out of the “special education” system until age 22, and then being “assured of placement” in sheltered environments of all sorts, they spend a good chunk of their lives trying to unlearn what is inappropriate, often through techniques like ABA (Applied Behavior Analysis). In other words, the learner is “reinforced” for “good” behavior, no matter his or her chronological age or actual level of understanding. As in, “Good girl for using your indoor voice; here’s some candy.” Now, yes, ABA is research-based and may be helpful; we’re not getting into that right now. My point is, used the wrong way, it can be extremely simplistic and demeaning. And my other point is, I’m starting to question whether this emphasis on what is “appropriate” is always necessary.
Now, as we have covered, what’s “appropriate” can change from setting to setting. For example, it is never appropriate for anybody, disability or not, to yell in a library, or throw food in a restaurant, or make rude comments to someone. And yes, just like everyone else, people with disabilities can and should be taught these things. But my question is, does the teaching have to come in the form of “behavior goals” and “plans” written by experts who may or may not understand the whole person, or why they do or say what they do? Or, can we teach “appropriateness” naturally, as early as possible, as we would do for people without disabilities? That’s a question I don’t think we’re spending enough time trying to answer.
And let’s talk about a few things that we call “socially inappropriate,” that may in fact not be. For example, let’s take the person with autism who stims during class. Yes, if that stimming includes yelling or banging, that person may need natural reminders to stim in a different way–as is appropriate for the setting. But think about it. If, say, a student with autism’s way of stimming is repeatedly clicking a pen in class, is that so inappropriate or disruptive? I would be inclined to say no; that’s one of those things the teacher, the administration–for heaven’s sake, the IEP team–needs to let go. After all, the kid who clicks that pen has to deal with other people’s versions of “stimming” all the time: chattering, doodling, throwing spitballs, you name it. And as we have discussed, because those things can cause sensory overload, clicking that pen may be the way that kid controls his or her other responses so he or she can–gasp!–pay attention in class and do what is APPROPRIATE.
Or, let’s take the person with an intellectual disability who asks what we might think of as an “inappropriate” question in public. For example, say we have someone whose cognitive ability currently stands at about age 6, even though his or her chronological age is 12 (and that person should, as we know, be treated first like a twelve-year-old). This young man or young lady asks something like, “What is that on your face?” referring to someone else’s birthmark or tattoo. He or she makes an observation like, “Your car smells bad” or tries to touch a woman’s jewelry because it’s pretty.
Now, again, for the setting, that person may need a natural reminder not to do that (contrast with some inane statement like, “Now, Joey, what are our behavior goals?” (And what is with people using plural pronouns when talking to people with disabilities? They’re not “our” goals; they’re the goals someone else foisted on us). But think about it. That person may be curious about birthmarks–and you probably were, too, but you didn’t say anything. That other person’s car may smell horrible. And in observing these things, and asking about them, the person with a disability has actually done something most of us, socially, won’t dare to do. He or she is actually participating in a more honest, open existence.
And you don’t have to have a disability that affects you socially, to experience this kind of thing. For example, I’m American, but I swear part of me must be British, because I indulge in mannerisms that are considered “typically” British, such as sometimes being overly formal or polite, or apologizing constantly. Why is this? Part of it is my personality, but part of it comes from an anxiousness to be “socially appropriate,” because there are people out there who immediately equate cerebral palsy with intellectual deficits, and an inability to do this. One of my best friends has fondly called me a “Jane Austen throwback,” and I accept the moniker because I’m a huge Jane fan. But…
Sometimes I wonder–are we so hung up on “appropriate,” especially where people with disabilities are concerned, that we’ve forgotten how to be tactful, yet honest? Is this the reason why people write to advice columns (like my personal favorite, Dear Prudence) to ask an expert how to handle their relative whose hoarding is endangering him or her? Their friend who seems to have no concept of hygiene and doesn’t seem to care, although they could be taking better care of themselves? Their vitriolic in-law who says horrible things to them, their spouses, and their kids? Are we so hung up on “appropriate” that we’ve forgotten how to say “NO?” Or so hung up that we can’t say, “Hey, this is how my child learns. If you can accommodate all your ‘typical’ students, you can make the effort to accommodate my kid?” Or, “I think my loved one and I know what she wants and needs, and it’s not ‘special services’ or a sheltered environment?” I think we need to be saying things like this more often, folks, and working to redefine what “social appropriateness” is. And although I don’t advocate rudeness–this is a modern-day Jane Austen you’re talking to–I realize that sometimes, that means ripping off the fake smile and appropriate mask, looking somebody in the eye, and telling it like it is. And sometimes, that includes, in many forms, the phrase, “Go jump in a lake.”
Halloween’s long over, people. How about we rethink some of those masks today?