How do you behave? Now that you’re an adult, do you even think about it much? (I’m assuming most if not all of you are law-abiding citizens who actually *care* how their behavior affects other people, so as long as you aren’t openly flouting anything, you don’t really think about it). Sure, you have moments where you behaved badly and look back on them with regret. And certainly we all have moments where “good behavior” helped us get where we wanted to go in life. But after a certain age, I doubt most of us go to bed thinking, “I was good or bad/my behavior was good or bad today.”
And yet, that’s not the case for many people with disabilities, child or adult. Their behavior is analyzed to death, almost from the minute they can understand what that word means. Even as adults, PWDs don’t determine what acceptable behavior is. Other people determine it for them, and those people, usually temporarily able-bodied, have some stake in controlling their behavior. Many PWDs, especially those with intellectual, emotional, and cognitive disabilities, cannot stop this control because they have no means to do so. Or if they do have means, they might allow the control to go on because it’s easier to give in than to fight back (and then be chastised again because of “behavior.”)
Now, I know what you might say to this, because I’ve said it to myself. “Chick, everybody has to behave, or the world devolves into chaos. And disability is not the only determining factor in whether your behavior is controlled. My boss controls my behavior at work. My spouse doesn’t control me (we hope not), but his or her behavior feeds into mine, so we try to be mutually beneficial to each other. My faith controls my behavior because I want to please my chosen deity.”
Okay, I’ll buy that – but only up to a point. Why? Because in all three of those cases, you still have free will. People with disabilities have free will, too of course, but the key is, the TAB population has an easier time exercising it. That is, if you don’t like something your boss is doing, you can go to him or her and say so. Hopefully, you’d do that in a respectful manner and your boss would respond to what you needed. But even if you walked into your boss’ office and screamed, “You can’t fire me, I quit,” that would ultimately be your decision. Unless you breached security or got violent, no third party is going to track you down and tell you that you exhibited “bad behavior.” You are not going to be penalized for quitting that job because it violated another human being’s schedule or plan for you. The same is true for your spouse or your deity. You can choose to sin, but your deity still accepts and loves you (depending on your religion, you may have to do penance, but that’s coming from the God of the universe, not some human team that thinks it knows better than you). Your spouse too, may argue with you, but he or she will still love you and treat you as an equal partner.
For too many people with disabilities, this simply isn’t so. Now, we’ve talked a lot about behavior plans and how ridiculous it is that they’re placed on people who have no say, especially adults. I’m not reopening that part of the discussion, but it has occurred to me: when and how do we get beyond “behavior?” Where people with disabilities are concerned, do we see only the “behavior” or do we solve the real problems? Why do we focus so much on behavior, and when did we start doing it? Is this fair to our fellow humans, just because they can’t walk, talk, turn in schoolwork, eat, or use the bathroom the way other people can?
I’ll give you an example, which inspired this post. It’s from Pinterest, an excerpt from an elementary-level behavior plan. The plan is written for a hypothetical student named Liz. It’s divided into sections such as Behavior (what is Liz doing that others don’t want her to do) and Function (why is she doing it)?
At first, the plan seems pretty straightforward. Liz is blurting out in class. Her teachers, IEP team, whoever, have determined she does that to get attention. Under “Function,” it is written that Liz receives no positive attention from her classmates and has few friends. Therefore, she blurts out in class. If P, then Q. A + B = C. I’m tracking with ya.
But then we get to the nitty-gritty, the place where the team writes down how to solve the behavior. They list three “reinforcers”: iPad, dolls, and M&Ms. In other words, Liz gets one of these if she “behaves” by not blurting out. She is also monitored throughout the school day to ensure she does not “blurt out.” Liz is encouraged to self-monitor, along with her teachers, and give herself “cool points” on a behavior chart–but ultimately, those in authority decide when and if she receives reinforcement.
Is there anything wrong with the reinforcement itself? Potentially, no. I bet there is not a parent or teacher among us who has not used positive reinforcement at some point. And if Liz is an elementary student, these reinforcements may be appropriate for her. Too often though, students are given reinforcement that is not appropriate. (I still clench up when I remember Cora, a “special ed student” in my high school who had to “work for” rewards daily. Every day, her chosen reward would be posted on the white board for everybody to see–ex.: Cora is working for ____ (a drawing of a can of Pepsi). Now, Cora had a low IQ, and she probably loved Pepsi. But gosh, she was in high school. After she’d been working hard to “behave” and “control herself” all day, did she really want that soda – or did she want the soda, but maybe something more meaningful, too?
Aside from inappropriate reinforcements, this type of attitude toward students, and especially adults with disabilities, does not help us move beyond “behavior.” It entrenches us more deeply, so we can’t solve the real issues at hand. Let’s go back to Liz. Do you remember what her team determined the function of blurting out in class was? They said she sought attention, and that’s probably true. But they also said Liz does not get positive attention from classmates and has few friends.
Gosh. If that were the case for me, I’d probably spend the whole class yelling! Whoever Liz is – and I’m not talking about the character, but whoever she represents – I bet they are screaming, inside and out. HEAR ME! SEE ME! PAY ATTENTION TO ME!
And yet, behavior plans don’t feed that need. They treat the symptom, not the underlying problem. The sniffle, not the cold. Now again, I understand that sometimes you have to treat the symptoms. If David is spending your entire class period screaming curse words and trying to hit people, he can’t learn and neither can anyone else. And depending on a number of factors, you may need to come up with a “plan” to help David. But:
(1. You have got to make sure the plan really helps. In other words, if David is yelling curse words because he likes to shock people, give him another outlet for that energy. Running and yelling at recess is appropriate (and because of that, don’t use recess removal as an automatic “behavior plan” punishment). Reading scary stories out loud, or telling them to classmates as part of a project, is appropriate. Yelling curse words is not.
Same for Liz. If the real problem is that she has few friends, her classmates pick on her, etc., treat the root. You cannot and should not force Liz’s classmates to be her friends. But you can and should get to know Liz as a person, not the misbehaving student who needs a plan. What makes her tick? What interests her? What does she have in common with her classmates? Is there a club or group she can be part of? With education, will her classmates become more willing to include her? You get the idea. And by the way, if you present Liz as a person instead of a “special” kid with “special needs,” you’re more likely to see more inclusion. Kids include by nature. They exclude only after we tell them to.
(2. The plan is not a god, and neither are you. In other words, yeah. As a teacher or paraprofessional, you may be required to monitor a PWD’s behavior. But for heaven’s sake, quit hovering. We’ve got enough trouble with helicopter parents; we do not need helicopter teachers, social workers, caregivers, etc. In other words, let’s say Fiona likes to communicate by giving people hugs, and sometimes she does it too much or too hard. It’s okay to say, “Thanks, but I don’t feel like a hug” or “Ooh, that hurts. Easy.” It is not okay, especially if Fiona is an adult but no matter her age, to say, “Now Fiona, we talked about this. You are not allowed to hug anymore today.”
(3. Make sure the behavior really is a behavior.
What do I mean by this? Well, I’ll keep it succinct. Persons with disabilities live in the same culture we do, but in myriad ways their culture is different. It has been called a “culture of caring,” where PWDs are so busy being cared for that they don’t get much of a chance to experience life as people first. But there is also the “culture of compliance” where, as others have said, “compliance is king.” We talked about this a little bit when we discussed PWDs and sexual abuse. It’s what happens when so much energy is focused on compliance, on making sure a PWD of any age obeys, that they have no avenues toward self-preservation, self-determination, or quality of life.
Now again, I’m not saying that if PWDs are expected to obey, their quality of life is automatically kaput. What I am saying is that as a society, we focus so much on compliance for this one group – and in turn hold them to so many double standards – that we don’t differentiate anymore. Everything is a “behavior.” There’s no reason behind it or if there is, it’s very basic or selfish, as in, “Lily is only doing this to get what she wants.” We can no longer look beyond “behavior” to see what this person thinks, feels, needs, or yes, wants (and those wants are legit, whether you think so or not). And as you know, when your needs, wants, thoughts, and feelings are ignored, what do you do?
Right. You behave badly.
Behavior exists. The key is, it is not the be all end all, even and especially for persons with disabilities. We say we love, respect, and want to help PWDs. I say it’s high time we behave like it.