Compliance, Obedience, and People with Disabilities: A Constant Conundrum

Hello readers,

To close out January, I have a topic that may be tough. Yet, it’s ubiquitous among disability-adjacent people. It directly affects people with disabilities, and there aren’t that many people calling for change. So we must cover it.

What is this topic? It’s the topic of compliance when it comes to people with disabilities. It’s a topic with many facets, namely the facet of compliance vs. obedience and how we as disabled people can present our case that, no, when we speak against compliance, we’re not advocating for disobedience, anarchy, or sin. And it’s a topic that can be difficult to find real “evidence” about because it’s not easily researched. For instance, when I Google stuff like “compliance-based disability programs,” what I normally get are results related to ADA compliance, which is completely different. But, I’m going to try discussing this.

Compliance vs. Obedience: What’s the Diff?

Is there a diff?

Well, as Joey Gladstone of Full House once said when contradicting Jungle Jenny on the perceived sameness of forest vs. jungle, “Actually, there’s a world of diff!” (See Season 6, the Radio Days episode. I loved that show as a kid. You can still stream it on HBO Max). Ahem.

Normally, I’d pull out some dictionary definitions here. But this time, I’m going to use connotation and anecdotal definitions first, because obedience and compliance are often used interchangeably. Even when they’re not, people assume they mean the same thing. And even when they’re not assumed to mean the same thing–obedience, compliance, submission–they all live in the same neighborhood, so to speak.

Psychology tells us that “obedience involves an order” while “conformity [or compliance] involves a request” (verywellmind.com). You could also differentiate by saying, obedience involves going along with an order, or what somebody says, because that person is an authority figure, while compliance does not involve the person being an authority figure. Compliance involves changing your behavior in order to “get along” or “stay in your comfort zone.” Both can involve avoiding negative consequences, but from what I’ve seen, compliance is actually seen as the “softer” version of the two. In other words, compliance allegedly says, “I’m asking you.” Obedience says, “I’m telling you.”

If we were just discussing words, I might leave this here. But we’re talking about a specific group of people, people for whom both concepts have been and are constantly misused. And if you’ve been with us for very long, you probably know, the therapies and “training” and “behavioral modification” aimed at disabled people are called “compliance programs/training,” not “obedience programs/training,” and advocates say they are negative. So why is that?

Well, a disclaimer. I am not a therapist, I am not a doctor, I am not an ABA practitioner (thank the good Lord). I’m not even a parent, so I don’t have little people obeying or complying with me every day. But going on connotation only, here’s my theory:

Compliance may be seen as negative because along with what I just explained, compliance is seen as, agreeing to follow some rule or obey some request from another person, even though they’re not in any authority over you, even though you disagree and even though you may not understand/compliance may actually hurt you. Conversely, obedience happens because you have already agreed that whatever this person is asking of you is the good and right thing, even though you may disagree or not understand or it may hurt. Why? Not only because that person is in authority, but also and more importantly, because you either have a foundation of trust with that person, or you have the autonomy to decide that when obedience is no longer tolerable, you can do something about it.

But That Doesn’t Work!

Okay, maybe that got a little complex. At least, it did for me. I bumped into this last week during a conversation on social media. I regularly see the Facebook page of an occupational therapist whose work I deeply respect. He is pro-autonomy, pro-natural disability, anti-ABA, etc. In other words, we’re teammates even though we haven’t met, he’s older than me, and he works in a different field.

However, I sometimes get worried and confused with some of this man’s rhetoric because remember how I was raised. I was raised as a Christian–not the stereotypical fundamentalist, but in a fairly strict home. I was raised that:

1. Mom and Dad are the bosses (1a. Dad is the Big Boss; Mom does not keep your misdeeds a secret from Dad, so it’s best if you come clean yourself; Mom has equal power but she can and will defer to Dad)
2. “Because I said so” is a completely legitimate reason and all the reason you need
3. Any adult–teacher, Sunday school teacher, pastor, therapist, doctor–is an extension of Mom and Dad away from home. They are a Boss, and if you disobey them, you are in trouble from them and at home.
4. Beating is never okay, but spanking is, and no, they are not the same, even though and even when you get old enough to argue that hey, both involve a hand smacking your butt. It would in theory be okay for a teacher to paddle you, although Mom or Dad would be upset if they did not ask permission (???) and actually, Mom or Dad would prefer to come down there and do it themselves (again, ?????)
5. You are not allowed to hit or otherwise aggress against another kid, unless they hit you first, in which case you can hit them back, although you may get scolded for it at home. And no, saying, “We don’t hit” in the case of the kid at school or down the street does not negate the right to spank (?????)
6. Children are to be loved and cherished, but they really have no rights in terms of decision-making, until they reach a certain age, and even then, not in certain areas (none of this clarified). Now, if another adult is being abusive toward you, you have every right to come home and tell Mom and Dad–sing like the proverbial canary–and they will then handle it. The abuser will get their butt kicked. But the implication was also, be careful in how you handle it, be sure that you personally have kept your nose clean. (No yelling, no running out of the room, no cussing, no telling the teacher something like, “My daddy’s gonna whop your butt!”)
7. We are not a rabid fundamentalist family. God is not Someone to be scared of. For example: my parents never, not one time, spanked me while invoking God’s displeasure, made me copy out of the Bible for doing something wrong, any of that. I was allowed to wear pants, watch cartoons, listen to secular music if it was clean (and eventually PG- or PG-13), go to secular movies. I’ve worn my hair short for years, I went through a phase of wearing chandelier earrings. At the same time, there was this undercurrent of, your obedience or lack thereof can cause us to question how closely you’re following God at this moment/if you’re committed at all.

So when I read the pages or posts of someone who is, say, sticking up for a disabled kid who defended himself to a teacher because that teacher caused a meltdown–knowing what the IEP said but not following it–I squirm inside. When I hear the rallying cries of team members who advocate for getting rid of stuff like, behavior charts and clips in the classroom, or rules about sitting properly in chairs or completing work during class, I wholeheartedly agree. But I also feel a little edgy. (Literally, it’s a sensory thing–I feel my muscles tightening as if they have sharp edges). Because that’s not how I was raised, and that’s not what works.

I mean, come on. I went to school for 12 years (more if you count the undergrad and grad work, but let’s stick to public). I sat at a desk and completed the work I was told to complete. I went to the bathroom when we had Bathroom, and later, I raised my hand and said, “Mr./Ms., may I be excused?” I complied, and I was okay. If anything, I used to feel mad at “lower-functioning” or “emotionally/behaviorally disordered” kids who disrupted my learning. If I did show emotion, like that time I cried in algebra class, I experienced self-loathing because I was acting like those kids and was therefore treated like them. (And at that point, I was so determined to comply, and so inundated with the idea that, “Abuse is literally, only, beating or calling someone a piece of garbage,” that it didn’t even occur to me to go home and tell Mom and Dad, “The special ed teacher physically took me by the arm and made me spend the rest of the period isolated.” I thought I was the one who’d get in trouble).

So anyway, for a long time, I thought this obedience vs. compliance thing was a bunch of “froopin’ hooey” (H/T Recess, another childhood classic). Bleeding heart liberal crap. As my dad says, “so much happy horse.” There’s a part of me that still kinda does. Which is why I asked about it on social media and why I delved into it for myself. And here’s what I learned and am learning.

It Works and Our Kids–and Adults–Deserve Better

I asked this question, esp. in regards to my Christian faith (because I still have that little voice inside me that says, Jesus loves me this I know, but He still wants obedience and the Bible tells me so, soooo…) A lovely person, M, answered me. I won’t go into everything, but she basically said, yes. It is okay to say “Because I said so” in some cases (like if you’re teaching a kid they shouldn’t run out into the street). We can and should absolutely teach children to obey, to comply with the structures put in place at school, on our streets, in public places.

But the key difference between this and a compliance-based program thrown at a disabled individual just because they have a disability or disabilities (which we’ll get to in a minute)? The difference is, obedience teaching implies a loving, trusting relationship you have built with that individual.

You can talk about my parents and their spanking all day long–and believe me, I’ve gone toe to toe with them over that issue myself as an adult and will again when/if I have kids. (We’ve reached an uneasy truce; neither of us are changing our minds and the topic is taboo right now). But I loved and trusted them my whole life. I obeyed them because of that love and trust. And whatever mistakes they made, they never hurt me on purpose and I knew they never would. Now, did I believe in my heart of hearts, “You hurt me by putting me through Bo-Tox yet again and no trip to the bookstore will ever make up for it?” Yes. Did I believe, “Mom, you had no right to say what you said, over my struggles with a pelvic exam, when you knew I’d have problems with it?” Yes. Do I believe, “Guys, you raised me to love Jesus, and I know you’re only human and you’re not Him–but I don’t think you got some of His words right?” Yes. But I love them too much not to forgive them. Or not to say, “I’m working on forgiveness and I can still love and trust you.”

The same with occupational and physical therapists, not all the time but much of the time. I don’t love them the way I love my parents and my family. That’s kind of against client/provider protocol, it doesn’t work. But remember Rosemary, the lady who was with me K-12? We had a certain level of love because we knew each other for 12 years, and while I didn’t comply with her right away, I learned to because I trusted her. I learned to trust, “This woman sees me as a whole kid/teen. And if she asks me to do things that I cannot do, or can only do to a point that I personally do not find acceptable, it is only because it’s part of her job. I’m harder on myself than she’ll ever be on me.” I comply with current PT Jenny because I trust, “This woman understands I am a whole person who can speak intelligently about her care and if I couldn’t, she’d actually go out of her way not to push me anymore than she does. I’m harder on myself than she is. She has told me up front, pain is no proof of progress, so I am safe.”

Why Compliance Programs Don’t Work

Contrast, negatively, your average compliance program (e.g., ABA, or more succinctly perhaps, a therapist who pushes a disabled person past their limits, says derogatory things, yanks or jerks on them, etc.) Or, as I’ve seen on social media, contrast teachers who do things like this:

-Penalize an autistic or sensory sensitive child for “not sitting right” in a chair

-Use a behavior chart in their classroom and move clips/names up and down for the whole class to see, knowing they have autistic/emotionally disabled/just plain sensitive kids in that room, who won’t react well and who may in fact have IEPs or 504s that say “don’t use this” (or should suggest they not be used. Many IEP teams find out about this after the fact, so it gets written in)

-Use set toilet times (seriously, I am so over these. Look, I get it. If you teach K-2 and you need to have an assistant or somebody supervising in the bathroom, that’s fine. But let’s get this through our heads, disability or not: when you gotta go, you gotta go)! And since I’m seeing this issue come up for disabled students in particular–my gosh, it’s bad enough we police them for everything else. STOP policing when they pee, and how they pee, and if they pee!

-Call students, esp. disabled ones, down for “behavior” that they themselves can use without consequences (e.g., telling a student to “shut up”–saw it on social media this week. Or, as happened to my little bro in kindergarten, telling a student that they are “dead meat.”)

-Penalize students, esp. disabled ones, for not completing classwork

Now again, I am not for one minute saying, behavior problems don’t exist or, ignore behavior problems. What I am saying is that, what we as the parents or the teachers or the therapists/specialists call behavior problems in need of “compliance training,” often are not. More importantly, this compliance training doesn’t even work. Why? I’ll bet you can guess, but just so you have it for your notes:

Right–because nine times out of ten–compliance does not involve a relationship. It does not involve love and it sure as heck does not involve trust!

I mean, think about it. Disabled or not, would you trust someone who uses your favorite toy, activity, or food items as leverage against you because you stim, or talk too loud? Would you trust somebody who physically grabs you when you try to “escape or elope” from math class at school (used because that’s what I would’ve done) without knowing or caring why you’re doing that? Would you trust someone who, when you report workplace abuse to them, says, “Maybe you need an attitude adjustment?”

So why the heck are we asking our K-12 kids to comply with anything these people ask them to do? Yes, even if it’s something as “little” as sitting up in a chair? And since we’ve opened this box, how often are we demanding that our K-12 kids comply with things they simply can’t do, just so we can pat ourselves on the back and say we achieved compliance? I, the “high-functioning,” A student, “pleasure to teach,” can give you a few examples. Remember art class and the alternative project originally written for a dang college kid? Remember “compliance” in math, which I allegedly wasn’t giving and for which I was monitored with behavioral sheets? Remember being grabbed by the arm and told to thank my workplace abusers for coming into a meeting at which we could try to resolve the situation?

What a load of stinking crap.

We’re asking disabled people, especially kids and teens, to do things they can’t do and worse, to give people levels of trust and control that they shouldn’t be given, don’t deserve, and haven’t earned, for no other reason than, “You are disabled, you are different, you don’t know better.” And as I have preached for years, we don’t do this with other minorities–so for PWDs, why is it still okay? Worse, we often use their personal experiences, their faiths, their personalities, to further compliance. Or we use their favorite things, their preferred activities, the people and pets they care about, as leverage.

It’s sickening, it’s cruel whether intended that way or not, and it needs to stop. Getting rid of compliance does not mean anarchy, it does not mean sin, it does not mean a free-for-all. What it could mean though, are new levels of authentic trust and respect, something disabled people are still fighting and waiting to get. And I think we could all comply with a little more of that.

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