by Cal Montgomery, Guest Contributor
Cal Montgomery is a physically and cognitively disabled activist who has spent 17 years as a fully nonspeaking adult and has been a part-time AAC user for most of the rest of his life. This essay is adapted from a post Cal made in the “Ask Me, I’m an AAC User!” Facebook group on October 6, 2020. It uses spicy language (including the f-word) and discusses physical and sexual abuse of disabled people.
Every day, your child is growing up, and there is a world out there for them. You want that for them – you want everything for them – and yet, the world can be a scary place. The rate of violence against disabled people is horrific. The odds are very high that a kid who cannot speak reliably will be abused, neglected, or sexually assaulted in their lifetime by a paid or unpaid support person, teacher, disability professional, or family member. Your child has a good chance of being harmed in some way by the very people they need to rely on. Multiple disabilities and multiple marginalizations up the odds of abuse, as does a special ed placement.
But some of the practices parents are encouraged to adopt with disabled kids increase the risks.
There is a reason that some disabled abuse and neglect survivors deliberately expose ourselves to re-traumatization over and over by talking about what happened to us and by engaging with parents and professionals who are doing the very things to other children that hurt us so badly. We are trying to prevent what happened to us from happening to your kids and others.
I was gang-raped by staff within 24 hours of my first admission to my first institution. This isn’t particularly noteworthy; plenty of us were being physically harmed, and not a few of us were sexually abused during my time there. The only time I saw the administration respond was the time one resident punched a staff person whose abuse of another resident had just been made public. And in that case, it was the resident who was disciplined.
You and your child cannot count on others’ commitment to protect them, or to ensure that abuse is taken seriously after it is discovered, because people with disabilities, and especially people who are believed to think or communicate atypically, are still devalued.
Your children need to learn that their boundaries matter and that you and the other adults you entrust them to will fight hard to back them up on that. Their clinicians and teachers have often been trained to erode those boundaries because it makes their jobs easier. They may not be conscious of this; it’s likely not deliberately malicious. But it ups the abuse risk. And having a communication impairment makes your kid an attractive target.
You can’t make them safe. You can make them safer and set them up to have support if something happens. And you can be someone they know they can count on. Which means so much, because life is wonderful and risky all tangled up in one.
So let’s talk about some ways to reduce the risk of your kid getting abused.
1. Keep the places they are growing up in as safe as possible.
Keep them out of segregated settings like special classes, schools, day programs, and housing for disabled people, and insist on integrated settings. Separate places out of the public view make abuse easier and less likely to be reported. If all the adults present are coworkers, there is strong pressure not to rock the boat. Surrounding your child with peers who care about them and can speak up if they see something wrong adds an important layer of protection. (One exception: if their primary language is a signed language, they need to be educated in a setting where that is the language everyone uses. Learn about Deaf culture.) If you get a chance, watch the movie Including Samuel.
Check up on teachers and professionals. Teach consent. Many professionals have been taught and socialized to control your child on the theory that making them act in a certain way (including complying with adult demands) will give them a better life. It will not, and the emphasis on training a child to be controlled by others is not okay. Be very explicit about your commitment to consent in front of other people. Tell them. Show them. Demand that they honor your child’s right to give and withhold consent. Other people may not know how to respect your child. For instance, they may want to restrict your child’s access to things that matter to them as a “motivational” tool to tolerate things that make them uncomfortable (which encourages them to quietly accept abuse and neglect later on), or use hand-over-hand methods to teach them. Do not talk or share private things about them without their consent, no matter their age. Read Roland Johnson’s memoir Lost in a Desert World and watch his keynote video on YouTube with your child (unless you or your kid can’t understand spoken English, then use the text at the end of the memoir). Go to the Diverse City Press page, order Power Tools and require their support people to read it. Look into supported decision making. As your child reaches adulthood, resist guardianship, which basically takes your child’s rights away.
Become aware of best practices in abuse prevention, and insist that they be followed. In the U.S. Olympic Gymnastics scandal, Larry Nassar was found to have sexually assaulted girls with their parents right there in the room, unaware of what was happening. But reducing chances for adults to be left unobserved with children (as Nassar also often was) reduces the risk of abuse. Make sure that the adults who work with your child are aware of the signs of abuse and neglect. Teach your child that being asked to keep secrets is not normal, and that risky adult behaviors are noteworthy. There are abuse prevention resources online and in your area: check out whether they are applied and taught to children with disabilities just like everyone else, and insist on them for your kid.
2. Equip them with skills to reduce their own risk as they move out into the world.
Honor all forms of communication. When your child is telling you something, listen. If they communicate with homesign or by flinging themselves on the floor or something else others will find atypical, make and maintain a dictionary to help new people understand them. Describe what they might do and what it means. If your kid “doesn't communicate,” go to the Diverse City Press page and order First Contact by Dave Hingsburger. Read it.
Be careful about how you teach “appropriate” behavior because “inappropriate” behavior has its functions. Of course you want to teach that, say, you don’t go to the local mosque and curse out the imam. Or you don’t trash the living room. But you don’t want to inadvertently teach that cooperation with authority figures is required. Even if you are certain the imam will not hurt your child, you can’t be sure that every authority figure in the child’s future will have as much integrity. And sometimes a loud mess is how you call for help. If your child does things others find upsetting, see if you can get your hands on Emma Van der Klift’s book Talk to Me, and go read David Pitonyak’s “7 Questions.”
Teach them to resist. Adaptive martial arts and self defense training can be a great thing. There are ways a sip-and-puff wheelchair user can dissuade an attacker.
Teach them to direct their support people. This comes off as rude to some: a 5-year-old instructing an adult on what to do is not the norm in most societies. But this is a specific kind of relationship they need to master to the best of their ability. They will become greater experts on their own needs than anyone else. For them to be self-determining they will need to direct others at times, and to expect others to take their direction. (Then back them up with the adults, such as the aides they may be assigned in school, who may consider this disrespectful.)
You and they need disabled friends. (Friends are not reference works there to serve you. I mean friends.) There are pieces of their lives that those friends can really help with. If you can find a mentor with a similar disability, that is great! Find examples of people they can identify with doing all kinds of things. Many disabled kids think they will die young because they never see disabled adults. Many marginalized kids of all sorts cannot imagine various kinds of lives for themselves because they never see anyone they can identify with living those lives. Show them many ways to advocate including some that make you uncomfortable. (Everybody experiments with curse words, and “Fuck off!” is a totally appropriate and often necessary button on an AAC device.) Also: watch Norm Kunc’s video The Right to be Disabled and read the interview he did with Michael Giangreco, “The Stairs Didn’t Go Anywhere.” Just because people in white coats say something is a good idea doesn’t mean they are right.
Help them be comfortable with a wide range of people, especially if you are white. Have them meet people of different races and ethnicities, introduce them to different cultures and religions, and let them experience different languages. Get comfortable with queer people even if you aren’t comfortable with queer practices. They will be interacting with a diverse group of people for their whole lives, and they need to understand what isn't a danger sign – like human diversity. Show your child what it means to be there for other people, too. Learn about the disability justice movement. Take action to support it.
Teach them to take risks, both physical and emotional. Teach them to manage and make informed decisions about risk. Taking risks and making mistakes is one of the best ways to develop skills, self-confidence, and independence. In a world that does not include the same supports and protections for disabled as for abled people, they will always have more risk than a typical person and navigating that is part of living a good disabled life. (But do not force things they are uncomfortable with.) Teach them to do stuff without you (I do not mean “ignore separation anxiety”).
3. Make the world they are growing up into as safe as possible.
Fight for access. The more your child is shunted out of the mainstream, the greater the risk. They should be able to enter the same spaces, obtain the same information, and participate in the same events as everyone else. Your child is growing up in a society, and that society should be welcoming to them. The world is not set up for that; it is set up to accommodate abled, not disabled, people (and even then, not all abled people equally). Fight to change the world – and along the way you will meet many adult disabled people to teach your child ways to navigate the world as it is now.
Work on meaningful community integration. There should be people in your community who see your child regularly, look for them, interact with them, and notice if they are missing. Your child needs to be visible. They need chosen reciprocal relationships between equals. Do not encourage abled kids to act like support people, because that destroys reciprocity. You want them interacting regularly with people who will notice if things are wrong and speak up. And you want people to see them as human beings, not lesser things, because it is easier to hurt an object than a person.
They need words for ugly things. Abuse, bullying, etc. They need words for “adult” things because those things may be done to them. If your child does not know how to report that they are getting hurt, they won’t. You don’t have to teach your grade schooler what sodomy is, but they do need to have the tools to describe it in case it happens.
It is stressful to launch your child into a risky world, especially when they don’t have the same tools for self-protection that you depend on. But the statistics show that trying to shelter them too much creates abuse possibilities too – and the reality is that your child, like every child, deserves everything the world has to offer. So take a deep breath, give them the tools, and then support them in going out and living the life they want.