A few months after the #metoo movement shocked not one single woman (because nearly all of us) but perhaps a handful of men, NPR released a year-long investigation on a less reported category of #metoos. It’s a subject you don’t want to think about. Neither do I. But we have to. I’m sorry.
We have to consider the fact that people with intellectual disabilities are 7 times more likely be sexually assaulted than non-disabled people.
If you’re like me, and you’re a caregiver to a person with intellectual disabilities, your thought pattern goes something like this when you read that stat:
- Oh my God. This is terrifying.
- I will make sure this never happens.
- How can I make sure this never happens?
- We–my spouse and I–will always entrust our child to incredibly good people.
- But mostly we will never entrust our child to anyone other than ourselves.
- And that one amazing caregiver we have. Who is a gift from God. Thank you, Caregiver. Thank you, God.
- This is probably not enough of a solution, because I’ve been told we will not live forever.
- We will have to rewrite the world somehow. How will we rewrite the world?
- We will have to equip her somehow. How will we equip her?
There is one especially powerful paragraph in the NPR article that bears repeating here. It’s a quote from Nancy Thaler, an advocate in the field:
“[People with intellectual disabilities] are generally taught from childhood up to be compliant, to obey, to go along with people. Because of the intellectual disability, people tend not to believe them, to think that they are not credible or that what they saying, they are making up or imagining…And so for all these reasons, a perpetrator sees an opportunity, a safe opportunity to victimize people.”
All of this is painful. I know. But this sentence is especially useful to us parents: They are generally taught from childhood up to be compliant…. Herein lies the power I believe we have. It leads us to vital questions:
Are we teaching our kids with intellectual disabilities to be more compliant than typical kids?
Or are we actively teaching them to stand up for themselves, to assert their wills, however inconvenient for those who serve as caregivers?
Unlike in most of my blog posts, I’m not going to get too personal here, to hash out what my family and I do. The subject alone makes me want to board up all the windows. But instead I’ll offer some generalized tips that might be useful. And please, please feel free to add your ideas in the comments.
Here are some of my initial ideas to ensure that we (as parents, as caregivers, as teachers, etc.) are not encouraging compliance in kids with intellectual disabilities, but are rather encouraging autonomy and agency:
- We can teach our kids ways of saying “Stop,” whether verbally or physically. Think creatively here: ASL and modified signs, PECS, brightly colored buttons on talkers, special sounds or hand gestures.
- We can teach every caregiver and teacher that sign, and to honor it adamantly. (I realize this doesn’t protect against a person who intentionally ignores that “stop.” But I think arming a person with a solid “no” gives them some confidence, teaches them they have a voice that should be listened to, and makes them that much less vulnerable against predators.)
- We can accept forms of “no” and “stop” that we might not accept in verbal kids. It might not always be appropriate, for instance, to scold a nonverbal kid for pushing another person if that person is in the kid’s space. If a nonverbal child doesn’t yet have another way of saying “Get away from me,” shoving seems a pretty good strategy.
- We can play practice games where we do something mildly irritating to our child–tickling, blowing in their ear, a small silly thing–and they communicate their “stop” to us, and we stop immediately, and we high-five them. Again, we’re teaching healthy non-compliance here.
- We can teach key reporting phrases on devices or with PECs or ASL signs or other means of communication. What *are* key reporting phrases? I don’t know. If you’re an AAC expert, feel free to weigh in.
- We can do our damnedest to always listen to those “Stops” and “no’s,” even if it’s super inconvenient to do so, even if it means they go to sleep another night without brushed teeth.
- We can applaud when our kids assert their wills. We can champion their defiance, knowing it will serve them well.
What else? What else, what else, what else?
We can’t control the world. We can use our best instincts, yes, and we can be extremely cautious. But I also think some of our work is in arming our kids with healthy doses of non-compliance.
Update: Here’s reader Kim Loi-Mergenthaler’s excellent response. So important:
Another important piece of this is recognizing that behavior is communication. My son doesn’t have an intellectual disability, but he has a developmental one (autism), and compliance is a huge issue if you listen to autistic adults. Therapies that focus only on external behavior, rather than on what disabled people are communicating by that behavior and the reasons they have behaviors, can lead to people with disabilities learning to disregard their own needs to follow adult directions. This is one of the main reasons that the community of autistic adults hates applied behavior analysis.