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Who are we to dictate what's acceptable from someone else?
Inappropriate Behavior
by Anne M. Zachry
Anne M. Zachry is a special education and disability resource advocate in Southern California and a freelance writer.
Schools, public agencies and programs serving people with developmental disabilities have the legal obligation to work for the independence and equality of their clients. But as with any kind of obligation, there's always a way to appear to comply without actually doing so.
My first job out of college was as an "employment specialist." I worked for a for-profit agency in California that got paid by the state Department of Developmental Services to get clients jobs--paying or volunteer. I was assigned adults with mental retardation, autism and traumatic brain injuries. I was to help them get jobs and help them "enhance their social skills."
This looks much easier on paper than it is.
Each person I worked with, in addition to having been diagnosed as having a developmental disability, carried the added burden of having "inappropriate behaviors" which required my constant intervention.
Looking back, I wonder: was it fair to label some of those behaviors "inappropriate"?
The concept of "normalization" sounds good. The idea is that if people can replace their less-successful behaviors with more successful ones, the quality of their lives will improve, and their reason for having "inappropriate" behavior will disappear. But in practice, it's caused a great deal of confusion--and a sense of failure--for those it's claimed to help.
I worked with one older gentleman who'd been institutionalized most of his life. He now lives with a roommate in an apartment, with several hours of staff support each day. He has a part-time job in a fast-food restaurant. It's not his dream job, but he doesn't know how to get the one he really wants, and it's convenient for his support staff to keep him employed where he is. So there he stays.
He doesn't know how to read numbers, and thus can't tell time.
Erring on the side of caution, he leaves his apartment every morning hours before his job begins, to make sure he won't be late. He waits at the designated meeting place for at least an hour before it opens.
When I worked with him, he'd sit for another hour and a half before I was scheduled to arrive. Upon my arrival, he'd pull out his wallet and wait for me to give him four nickels, his reinforcer for showing up to the program on time.
He'd been on this reinforcement schedule for about seven years. It was meant to make him more independent by stressing the importance of punctuality. Instead, he'd become dependent on that daily 20-cent reinforcer, and wasted hours of his own time every day waiting around so he'd get it.
The 20 cents was (and most likely remains) part of his regular income, and I doubt he'll ever see it any other way. (The fact that so much of his time is tied up earning 20 cents each day is an issue that could be an article in itself.) And twenty cents a day may seem petty to quibble about. But it's the idea that bothers me.
The idea, I suppose, is that some people don't have the attention span to see the long-term effect of their efforts. So immediate reinforcement of a step toward that long-term goal is supposed to make that goal much more attainable. What usually seems to happen, though, is that the person gets stuck at that step, repeating it over and over to get the reward--and never progressing very far beyond that step.
This isn't to say certain milestones aren't reached. However, some goals seem more important to clients than others. "Stalling out" at a certain step not only ensures continued reinforcement of that one behavior; it also means the client gets to stay involved with staffers he's become attached to, and who make up his social world.
"Success" may have too high a price: Why start bathing daily when it's such an inconvenience, and when you know that for every five (not necessarily consecutive) days you do bathe, you get to go to the movies with one of your staff--someone you get to choose, and who happens to be a very attractive person you like? If you start bathing every day, you've met your goal--then there will be no more movies as reinforcers, since you've met your goal for the target behavior of bathing.
This brings me to "age-appropriate behaviors." A 45-year-old man with a Barney lunchbox isn't "age appropriate" per se. But if I'm not mistaken, every citizen is entitled to freedom of speech under the First Amendment. If that man has the mental age of a first grader, and if that lunchbox is his way of expressing all things that are Barney, then what makes his lunchbox any different from the NRA sticker on the back of my neighbor's pickup, a cigarette ad on a billboard near an elementary school or the opinions of Howard Stern?
Who are we, the nondisabled, to dictate what is acceptable behavior for people who have disabilities? We sure don't want others dictating what's appropriate for us.
Granted, I don't want to go to lunch with someone who stinks. But I'm not going to bribe him to wash. If I do bribe him, I'm reinforcing his behavior as one that merits my continued attention!
I'd just as soon tell the man, ""Your body odor makes me lose my appetite. I'm sorry I can't have lunch with you. Perhaps one day when you've bathed." If he then makes the deliberate decision to bathe, great. But it is still his right to stink to high heaven if that's his choice.
People will disagree with me about this approach--particularly those who stand to gain financially from clients who continue to need their "support." But the movement to give independence to people with developmental disabilities isn't altogether succeeding, and this issue is, I think, at its heart. New methods that appear to offer freedom, choices and community access often aren't really that at all: living in a nice cage is still a caged existence.
It isn't the place of the state--or their subcontractors--to dictate the morals or values by which their clients live. It's neither the letter nor the intention of the law.
I'd like to see a program that says, "You are an adult, and this is America. You are responsible for your actions. If you aren't sure how to handle certain situations, we'll be happy to help you. If you don't want our help, fine. But be aware: everything you do has a natural or logical consequence. And if you do something the wrong way, you are going to have to deal with whatever comes your way as a result."
If we truly want adults with developmental disabilities and other mental disabilities to become independent members of society, we must do it on their terms. We must take seriously their civil right to life, liberty and the pursuit of happiness--regardless of how peculiar we may find their preferences.
It all boils down to respect. How hard is it for us to respect a guy who has had the same underpants on for three days in a row, or a woman who carries a magic wand because she thinks she can use it to transform her troublesome thoughts into effective coping statements? Or the love-smitten couple who never go anywhere without each other--including the restroom? How hard is it for us to afford dignity to a mentally retarded schizophrenic woman who, at the top of her lungs, tells the companions inside her head to leave her alone while she rides the bus?
It's hard. But the point is, it's none of our business, really--the state of someone else's underpants, their coping strategies, relationship matters or sources of angst. We'd be horribly offended if any of these people--if anyone at all--were to intrude into our personal lives and start second-guessing our judgment. Perhaps others do question our choices in attire, accessories, romance--but they don't make us change our behaviors. When the shoe's on the other foot, it doesn't fit so nicely.
Affording equality and independence to those being served by programs for mentally disabled people doesn't mean forcing them to act like us. Rather than expecting people to conform to what is "socially acceptable" as they become part of the community, we should instead work to have the community embrace the things that make them unique--broadening the continuum of what we consider "individuality."
We shouldn't look at a 45-year-old man going to work with a Barney lunchbox and say "What a disgrace!" or "Har, har, har! Look at that guy!" We should be saying, "Wow! Neat! That guy's mentally disabled and he has a job."
But we haven't gotten past that idea of removing from view all that is different. Maybe we aren't locking folks up in facilities to get them out of sight anymore, but we are still making it perfectly clear to them that they're unacceptable the way they are. We're trying to force them to be "normal" so we don't have to look at them being "disabled." The real change needs to take place in our own minds and hearts.
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