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.
I listened to the NPR article tonight too. Our children need to be taught words of refusal, and especially need to have their words respected. Child abuse awareness and mandated reporting are a part of educators’ trainings, but not necessarily this aspect of high risk children. The issue should be added to In Service topics. I love that you’re on this. Tiger Moms grow Tiger Kids.
Thank you for writing this. I have a four-year-old daughter with a developmental disability, including an oral-motor based speech disorder. She sees a speech therapist who does a lot of hands-on (PROMPT) work with her, and often my daughter pushes away the therapist’s hands and doesn’t want them on her face. I really struggle with this. I want to teach my daughter that her body is hers alone and that she has the right to say no to any unwanted touch. On the other hand I want her to be able to use her voice to express her refusals and desires with strength and authority, and this method (I believe) is helping her find her voice (she also uses sign and Speak for Yourself, like your daughter!) I’ve been grappling with this contradiction. We’re taking a break from PROMPT for awhile so we’ll see where that leads us…
I am a speech-language pathologist and advocate for survivors of sexual assault as a survivor myself. I would pull away from PROMPT. there are many other methods to work on verbal speech. Communication is the goal even if that means different roads to get to our destination. I think honoring your child’s boundaries and body autonomy is ultimately more important and they can explore other avenues to work on the verbal part. That’s just my opinion but I am a proponent of communication and consent education given my two passions.
Thanks for your reply. We stopped PROMPT ages ago for the reasons I struggled with and that you have articulated. Teaching her physical autonomy and consent were more important to me, and she communicated loud and clear that PROMPT was not for her.
When you ask “what else?” I guess you are implying that boarding up the windows is not a feasible option, because I’m with you on that one! My daughter uses a Tobii eye gaze device and I have put in buttons that say things like “no baby talk please” and “I understand you”, “I am 7”. But this post made some great suggestions for other things she needs to learn too that I hadn’t really thought of because she’s always with me or my husband. But we definitely celebrate any act of defiance around here. We celebrate her sharing her opinion and we celebrate the fact that we get to correct her if necessary. For example, she can operate the TV with her Tobii, and sometimes she’ll turn it on during supper. Well, we don’t watch TV during supper so we tell her she needs to turn it off, and sometimes she refuses, and it is awesome. I think that this topic is actually something that should be addressed in college classes, and training programs for people who will be working with people with disabilities, but as a former special ed major and direct care worker, I can say that this isn’t something that is stressed at all. Thanks for the post! I loved (and hated) it because it needs to be said, but it surely is terrifying.
Thank for writing this! I have thought long and hard about this, too. And I find it awesome that my daughter’s first word on her AAC was “stop.” We modelled it extensively because it was just very clear that it was the number one message that would give her the most power over her life at that time.
My daughter is 14 and has complex disabilities. Some other strategies we have worked on:
– Clear decision making agreements. For example, she has the right to not enter a room, and the right to leave a room. Any room, at any time, including at school. She often balks on the threshold of a room and needs time to decide if the light and noise are acceptable to her. Whether to enter a space is ALWAYS her right. She does not have the right to enter any room she chooses, but it is always her choice whether to enter or leave. She has the right to refuse to leave with any adult; this happened most often at school but even happens at home. She has the right to say no to going with an adult. When this became an issue at school, we actually made an IEP goal that she would refuse to leave with anyone unfamiliar. http://www.helensandersonassociates.co.uk/wp-content/uploads/2015/02/decisionmakingagreement.pdf
– inclusive placements and activities. When my girl was very small, I met a man named Lou Brown who told me that she would always be safest in wide open spaces with people who know her well who have no power over her and who are competent witnesses. She said she would be most vulnerable in private enclosed spaces with people who have power over her and no competent witnesses. So we have put her safety in the hands of people who have no power over her. In a school setting, that means peers. Her peers are actively involved in her programming and school meetings. They have heard since she was very young that it is their JOB to notice if anything seems wrong, if Maggie doesn’t like something, and to speak up. They have a formal role in her school meetings. This is not how schools usually work! Schools are structured to tell other kids “there is nothing to see here, leave the support work to us.” We have refused to go along with that. And it was only fellow students, not a single adult, who noticed when she was being restrained, who collected documentation, and put a stop to it. Adults can rationalize all kinds of different treatment for kids with disabilities, but her peers are our eyes and ears.
– regular spaces: My girl uses the regular washrooms at school, eats in a regular classroom (she hates the high school cafeteria) and stays in regular spaces at all times. Valued, ordinary spaces where anyone can walk in at any time. Her personal care is provided in a regular accessible stall in a washroom where anyone can enter the other stalls at any time. When she was younger, one of her IEP goals was to decide which classmate to invite to attend the washroom with her, since we know that girls travel in packs to washrooms and that is SAFER. For things like her g-tube feeds, those take place as a regular support in regular classrooms and places, not a private thing that needs to be hidden. For my girl, if support is somehow shameful and private, then it is not safest. There are certain exceptions for when a completely private space might be necessary, but not routine care and support.
– regular familiar staff: we named in my daughter’s IEP who could provide personal care and never named more than 2 people. This means that if those two people are not available, she comes home or I go into the school. But its very important to me that she learns that only very familiar, trained people are allowed to provide her personal care. At home, the province of Ontario provides up to 10 hours per week of home care support, but the agency would send strangers if we let them. We don’t let them. We have declined care unless my daughter has met and approved the staff who support her. We’ve gone long periods of time not receiving all the care support she is entitled to simply because there wasn’t a staff person she would approve. She has disapproved of more staff than she has approved. She has the right to refuse care. But we have done everything we can to limit the number of people who might provide her care, and to ensure she consents to the care she receives.
– person centred planning: we do a LOT of person centred planning that asks What is most important TO her and what is most important FOR her? Obviously, protecting her dignity is important FOR her, but having control of her body is important TO her. We ask what is working and what is not working. We all know its our job to observe her for clues about what she feels is working and not working. Decision making agreements, one page profiles, communication charts, person centred review meetings…all these things are an attempt to make sure that her support is on HER terms. My goal is that by the time she leaves school, she has learned how to direct her own support. To receive it on her own terms. To request or decline it. We are learning as much as we can about supported decision making and make decisions with a circle of those who know her best: long time friends, older girls who have supported her in a variety of activities, and family. We try to take every important decision back to her circle so that we hear from a large number of those who know her best. She is still emerging as an AAC user, but she uses her body very effectively to “ratify” input from others or to reject input from others, such as vocalizing and resting her head on the shoulder of a friend who said that eating lunch with her friends is most important to her, and putting her head down when I said that her literacy instruction and aided language input is most important to her. (She clearly did not ratify my message!)
Thank-you for sharing your story and for giving your kiddo the tools to say “no.” I wish all parents would respect their children in this way!
Agreed except that many of our kids are quite literally incapable of being taught any sort of agency at all as their disabilities are far more profound. That means we have to also look at cause — at the culture itself — at the systematic dehumanizing of people with severe cognitive disabilities, and the burdens long-time caregivers face.
DOGS have the capability of self-agency, and dogs have the cognitive equivalent of a human 3 month old..or less. Even reptiles and insects can make choices and express some level of preferences. Would be rather sad to imply that a human being, however disabled, has less capability than a dog..or even an insect.
I’m not sure I understand your comment as a response to my own.
Teach body parts – all of them. Preferably with the real names. It’s something they tell parents of more typical kids too – because kids who use “kid” names for things aren’t taken seriously. There’s an article that went around a year or two ago talking about how most predators don’t use the real names for private parts, and the reasoning that teaching kids the right words gives them some level of protection.
I will never forget the time my mom (who was a foster care worker) interviewed a preschooler who was suspected to have been molested, and the said something that came across as completely nonsensical, and everyone thought the kid was making things up….until they asked mom if the boyfriend had any tattoos….and suddenly the kid’s statement made complete and total sense.
All good ideas to work with both males and females about private space, abuse, safety. We tried, many of us did with our children, whether disabled or not, as many of the nasty secret doings of trusted adults, friends and even family came to light when my children were small. We realized we could not trust coaches, teachers, friends, family, caretakers and even priests and doctors. I feel that we made a dent with those of our children who can communicate well, and we did protect our children by not leaving them alone at places that usually were drop offs. Yes, sat through nearly every private music lesson, worked at heavy parental presence at events.
Sadly, peers, classmates, friends not the champions I would have like them to be. Two kids I well know got assaulted and badly damaged by what should have been a circle of friends.
The problem is that the most hurt tends to occur the most from those who are the closest. For those of us if privelege, we can temper some of that. For others no way.
A blog, “Rarer in Girls”, mainly about an autistic girl and her family, her mother in particular, has a post where the parents are told that their daughter will certainly be assaultef. Statistics are crystal clear on this. Sobering, frightening.
Thank you for writing this.